For all you new trach moms out there, I recommend you not multi-task when boiling your child’s trach for the purpose of sanitizing it. 🙂 We change Rudy’s trach and replace it with a fresh, clean one each week. I clean and boil the dirty trach and then once it’s dry, I pack it away for the next trach change. Well, this past weekend I put Rudy’s trach on the stove while I prepared for dinner guests and tended to Rudy’s dirty diaper. Max came in a bit later and said with a turned up nose “What’s that smell?”. Somewhat irritated that Max was turning up his nose at the dinner I was preparing, I quickly responded “that’s mommy’s yummy potatoes, Maaaax!”. Again with the turned up nose he looked at me quizically and walked away when I turned and noticed the smoke coming from the stove top! Yikes!!! No wonder Max had a turned up nose…it smelled awful! Rudy’s trach looked like a over-toasted marshmallow and my pan was ruined… More annoying than losing one of my most-used cooking pans is the fact that I have to track down another Shiley 4.0 Neo trach from our medical supply company (Apria…affectionately known in our household as “crApria”) which will inevitably involve more than one prescription faxed from our doctor’s office and several follow-up calls for which I have very little patience. Oh well, we had fun with our dinner guests nonetheless and my potatoes turned out pretty good too.
We just haven’t had the heart to post at all since Logan’s funeral last week…in part because we’re tired, a little depressed and because the momentum we felt in Rudy’s treatment plan a couple of weeks ago feels like it has stalled a bit. Some days it is really easy to wait for the Glenn especially because we are home and enjoying our fall together under one roof but then other days (like today) the wait is truly nerve-wracking! (sigh)
We were relieved to get a call from the pediatrician’s office yesterday informing us that the H1N1 vaccination was in after a long delay. I was instructed to come in with Rudy right away and to check in without mentioning why we were there. Like everywhere else, our county received a very limited amount of vaccination doses…clearly not enough to go around…so going to get Rudy’s vaccination felt a bit like an undercover covert operation but we are grateful he made the cut. Originally, Rudy’s doctor wanted all of us to get it as an added barrier of protection for Rudy but that isn’t possible at this point and after a call to the bigger kids’ doctor yesterday, it seems they’ve run out of the regular flu shot too so we trust the big kids will be their typical healthy selves this season and stay clear of any major bugs on their own!!
While I had Rudy in the doctor’s office yesterday, I put him on the scale and he weighed in at 19 lbs 8 oz! Rudy has outgrown formula and we started him on Pediasure two weeks ago which is high in calories. The increase in calories seems to be helping him gain weight. It’s still a delicate balance as an increase in volume can be problematic for his heart but because Rudy seems to be tolerating the higher caloric content of Pediasure, we can get him more calories in the same amount of volume. The switch to Pediasure distracted us from making any headway with baby food…Rudy’s pretty uninterested in taking food from a spoon but we’ll start back up with our attempts now that he has transitioned to the yummy, vanilla pediasure shakes. So, we move ever-so-slowly forward (but forward nonetheless) in the world of food and weight gain.
Lastly, Rudy had his annual assessment from Early Start Services this week that is overseeing his developmental progress. Their assessment is broken down into 6 categories: Fine Motor and Perceptual Skills, Cognitive, Language, Social/Emotional, Self-Care/Feeding and Gross Motor. Overall, Rudy is beginning to register in 5 out of the 6 categories at the 6-8 month age level and in 2 of the 6 categories at the 9-11 month age level. As much as we would love to see him sitting on his own and becoming mobile, we are grateful for his progress and know these skills will emerge in time. If they had a category for “smiles”, Rudy’s would register far beyond his years.