Wednesday, December 14, 2011


I know, it's been more than 5 months since I posted! This is partly because a lot has happened (Iggy and I have been busy with work and Iggy has had some medical stuff of his own going on) and partly because very little has happened with Magnus's health.

We've only had one cardiology appointment since the summer, and from what they could tell in the echo, everything looked good! Magnus has managed to avoid any major illnesses so far this season, so we've stayed out of the hospital since his last cardiac catheterization. He goes back for his next one on January 4th, and we are keeping our fingers crossed for no ugly surprises from the cath.

Magnus has also continued to do well with his growth and development. He's grown a couple inches and has gained 3 pounds since the summer! He's in the 10th-25th percentile for weight for his age now, but has dropped off for height. I think this just means he's due for a growth spurt. He finally started walking on his own in August, and since then has been working on spinning, jumping, dancing and running. He also FINALLY learned to crawl...after he learned to walk. He's now almost at age level for his gross motor skills, and now his biggest challenges are speech and feeding. Magnus has very good understanding of what we say to him, but he only uses a few words, preferring to grunt and gesture to get his point across. He started speech therapy a couple of months ago, and we're hoping this will move things along. I saw a study published a few months back where researchers found that there was an increased risk of speech delays and learning disabilities among children who undergo general anesthesia more than once before the age of 2. Magnus underwent general anesthesia 7 times before the age of 2 (2 open heart surgeries, 1 G tube surgery, and 4 catheterizations!)

As for feeding, Magnus still gets almost all of his nutrition from sugary high-calorie formula, and we still use his feeding tube several times a day and overnight every night. He has actually become quite adventurous about the foods he will put in his mouth, but he still hasn't figured out how to chew and swallow solid food, and if he gets small pieces of food in his mouth he will panic, gag, and throw up. So, for example, he "eats" an apple by biting off tiny pieces with his front teeth and then throwing them on the floor (in possibly related news, Iggy told me that he saw a mouse in our living room last week!). He's been going to feeding therapy on and off for several months, but recently started home-based therapy, so again, we're hoping he'll make the same kind of progress in his speech and feeding in the next 6 months that he has made in his gross motor skills over the last 6 months.

Magnus turned 2 on November 19th! We had a small party for him (a small party feels like a big one when you have 6 children ages 4 and under in your house!) and he got a lot of presents. And now we have Christmas coming up. He doesn't know about Santa or any of that stuff yet, but he has been pretty interested in our Christmas tree, and has been pretty good about leaving the ornaments alone!

I'll end by posting a few recent pictures. I'm sure I'll be back in this space in a couple of weeks to report on how the cath goes!