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!


  1. What great news! He is such a cutie.

  2. He has gotten so big and what wonderful news! Lorelei has the same eating issues, however we are beholden to the stupid J-tube for our overnight feeds. What rate do you feed him at night? He doesn't get sick in the morning from being fed all night?

  3. Sabrina, we give him 25 ccs/hr for 8 hours. He rarely throws up during the night; a bigger problem is that he tends to get gassy overnight and this often wakes him up.

  4. What formula do you have him on? How many cc/calories is he getting? How much do you give him in the g-tube during the day?

    Right now, Lorelei is on Pediasure Peptide and is receiving 1000cc a day which equates to 1000 calories. She gets 850ml at night at a rate of 76cc an hour, and the remaining amount via g-tube (50cc 3x a day). Her GI doctor has pretty much left it up to us how she gets the 1000cc. Sometimes I can get her to drink the formula (in minute amounts) if I give it to her in a medicine syringe with a water chaser.

    She really isn't eating much by mouth because she has sensory issues when it comes to textures on her tongue. Anything too thick causes her to gag and it has become such a fight to get her to eat as she has now entered the "no" phase.

  5. Magnus gets Boost Kids' Essentials with 1.5 cal/cc. He gets 4 130cc boluses (he usually drinks at least some of these boluses by mouth), plus the 200 ccs overnight; total is 720ccs = 1080 calories. So really about the same total as Lorelei, but we are giving him much more during the day and less at night. I feel like now that he's caught up in his weight maybe we should experiment with cutting back his tube feeding so he's more motivated to eat real food.

  6. I have been thinking the same thing about cutting back, however Lorelei has such a psychological block when it comes to eating. I think part of it has to do with the fact that she vomits a lot. I am going to see how things go with her cardiology appointment on Tuesday and go from there. I am hoping that her tricuspid valve regurgitation has not gotten worse otherwise we could be looking at a possible surgical fix.