December 6, 2011
by marfmom
5 Comments

So Much to Do, So Little Time

The next 6 weeks or so are going to be a pretty wild ride over here.

Last week, we bought our first home (pending the final appraisal). It still hasn’t sunk in yet, that Mark & I are going to be home owners. The house is really cute and in a great neighborhood. I’ll definitely post pictures once we’re all moved in!

In 4 weeks, we’re moving to Ohio. Here’s what has to happen in those 4 weeks (in no particular order):
– Clean out closets of everything we’re NOT taking to Ohio
– Pack
– Another sleep study for Baby J
– Complete M’s IEP testing and IEP meeting
– Baby J’s IFSP testing and IFSP meeting
– Wrap things up with various doctors (pediatrician today, GI, pulmonology, etc.)
– Cram in as many therapy appointments as possible for both boys
– Throw a very early birthday party for M at his school
– My college roommate and her husband come visit
– Christmas and New Year
– Autism moms’ holiday party
– Veterinary preparations for the cat to travel

So. Yah. A little stressed. :-p

I’m feeling better now that we’re in contract on a house, but I’ll feel a LOT better once everything is squared away with Baby J.

As you know, we’ve been trying to get his reflux under control for too long. We met with his GI on the 18th, who agreed that J needed an upper GI test. That was completed on Friday and let me tell you: other than the sleep study, that was the worst test he’s been put through. I wanted to cry, he was so uncomfortable! Anyway, both the radiologist and pulmonologist (who we saw today) said that J’s reflux can be treated with a nissen fundoplication, since his medications aren’t working. The GI was supposed to call me on Friday to discuss options but he hasn’t. In fact, it took him 2.5 weeks to call in the referral to a feeding specialist for J (which was his suggestion in the first place), such that there are no available appointments left before we move. Grrrr!

Having had a nissen myself, I have mixed feelings about this as a solution. I’m organizing them into a post because I have a feeling that the nissen is a reflux solution that is going to be presented to many a Marfan-family and perhaps hearing from someone who has grown up with the procedure will be helpful. Look for it soon! (And cross your fingers that the GI gets back to me soon; if we elect to move forward with the nissen we’d like to do it before we move.)

December 5, 2011
by marfmom
5 Comments

Helplessness

The Menininho has been having a lot of difficulty over the past week. He’s been in a different time zone, away from therapies, away from Mark and me much of the time while we were house hunting, around probably 40 extended family members, and now that we’re back at home one of my best friends from college (“Aunty K”) is visiting. Like most people with autism, M doesn’t handle changes in routine well.

I’ll admit, I’ve been frustrated with him and with autism. After 5 hours straight of him asking about bathrooms literally once every 60-90 seconds, you might be a little batty too. We’ve witnessed the recurrence of some nasty meltdowns, the likes of which we haven’t seen since the spring. He’s also taken to smacking K every time he sees her.

Tonight though, I was reminded of how hard autism can be on M too. We’d spent the afternoon at the monarch butterfly reserve and he’d fallen asleep in the car on the way home. Waking him up to go in the house can be tricky, but tonight it was particularly traumatic for him and sparked a meltdown that lasted a good 30 minutes. M screamed and cried and threw himself around. He begged me not to go, but swatted at me when I stayed. At one point Mark asked “what do you want?”, to which he piteously sobbed “I want cry!”

My heart broke and I pushed back my own tears. My poor baby was in distress and knew only that he wanted to cry, but couldn’t communicate more than that. How frightening that must be for him, all these changes and feeling stressed but perhaps not knowing why, or at least not being able to tell us. And of course, as a mother, my first instinct is to want to hold my son and kiss him and tell him it’s going to be ok, but being touched is the last thing he wants in the throes of a meltdown.

Eventually the Menininho calmed down enough to remind me that I’d promised to make a “happy cake” (birthday cake) for Baby J, so we worked on making cupcakes together and the rest of the night went ok, but I’ll never be able to forget those feelings of helplessness as he proclaimed “I want cry.”

Autism, you suck.

December 2, 2011
by marfmom
1 Comment

Friday Favorites

It’s Friday, so you know what that means!

Come on over and link up the favorite post that you wrote this week. I promise I’ll come over and comment on each of your posts. I hope that you’ll spread the love and visit the blog or two above yours too. I’ll leave the linky up till Sunday night.