Thursday, March 28, 2013

"What's wrong with me?"

Yup, Jax asked me this today when I put the remainder of his lunch through his feeding tube. I mean... what do you do other than hope your heart recovers from skipping a beat when this little boy says something like that.
Jax started a cold yesterday, so the congestion is making him gag, so you can imagine how well meals are going. I'm sick and tired of watching him go through the pain of vomiting, and of course cleaning it up, so after he drank half his lunchtime milk, I just put the rest of it through his tube. He just looked at me and asked what was wrong with him. I was taken aback, and looked back at him saying NOTHING was wrong with him, absolutely nothing. I told him I didn't want him to feel like he had to drink his milk fast to make the bus for school and get sick again. He didn't say anything back, but my heart was racing. This was exactly what I was hoping to avoid when I realized he was going to need a feeding tube past his infant-year. I wanted so badly for him to never remember having it, or feeling different, or realizing his body doesn't work like everyone else.

Of course I know this makes him the strong willed kid he is, but it really made me realize today that he is going to remember this, and he is going to realize more and more that most other people don't have a tubie. We will continue to keep things positive for him and of course there's tons of life lessons to be learned, but... I just don't really have many more words to express about it all. I just hate all of this for him some days.

Otherwise the day has been filled with phone calls. I received a call from Brady's therapist that he qualifies for 4 weeks of summer speech through the district, but Jax does not. That's good news for Jax I guess!
I received a call from Brady's teacher that she's concerned about the bumps/pox that are on his legs (Molluscum Contagiosum). They've spread down to his ankles and now a few on his abdomen. I told her the doctor suggested we don't treat them and they'd go away on their own by summer time, but since we've noticed they've spread so much, I said we'd have him looked over again. So I'm bringing Brady in by his pediatrician tomorrow morning to take a peak at it. I have a feeling the doc will say to just stay the course. I guess the cost of another co-pay is worth not feeling like a bad parent to the teacher. (sigh)

I also got a call from Jax's medical supply company saying that insurance is most likely cutting off Jax's Pediasure (he uses a medical grade version with a higher caloric volume and fiber for GI). I have to call back Monday to see if they could get it go through for our April delivery. I really just felt numb about the situation given that they pretty much cut Jax off from therapy as well, so... I'm going to keep those feelings bottled up until I finish writing the appeal letter. Yeah, I'll let it all out on that!

Then I was called (seriously) from the OT/PT department at Childrens Hospital for the boys to be reviewed in mid-April. I asked if it was totally necessary since the boys do have IEPs at school, and the lady said she actually needs the boy's IEPs so they can see if anything is missed through their evaluations. She had a note from the Dev Center that the boys have Speech Apraxia and they just want to cover their bases that their motor delays are addressed since things like Dyspraxia or other motor dysfunction is commonly associated together. I guess... it never hurts to have things double checked, but oh my goodness, sometimes it never ends. Hey, just help us potty train, and we'll be happy ;)

One last call, and that's that our windows are finished! They will be installed next Wednesday and Thursday. Hmmm, I guess I should've been more proactive on figuring out some new window treatments. Oy. We need to remove every window treatment by next week, and obviously since many of them are original to the house, it's time to be updated. So I ran to a local window treatment store this afternoon with pictures and measurements. I got a lot of great ideas, but um... I'm a bit sticker-shocked, HOLY COW that stuff is expensive. OY!

Such is life.

Well, I hope you're all ready for Easter this weekend. This is the first year the boys understand the Easter Bunny, which should be suuuuper cute to watch them search for baskets. We have a day planned of brunch and dinner up north with both of our families so the day will be filled with family, that sounds kind of lovely right about now! Enjoy the milder weather and the holiday everyone!


Jen said...

You are such an awesome warrior mom for your boys! I've been reading a long time, but never commented. Our baby has some health issues and I hope I can be even half of the mom on a mission that you are :-)

Melissa said...

I meant to talk to you more about the windows. We were visiting some friends earlier in March and they have the "wood" vinyl insides and dark wood trim and they look great. I know you were worried about how that would look. I think you'll love them.

Michele said...

For the molluscum, you CAN have the doctor remove them with cantharidin. It was the only thing that stopped my daughter's outbreak when she was 4. OMG it seemed like she had them everywhere and they just kept spreading. My other daughter started getting cellulitis with them and was on multiple courses of antibiotics for it - she would go from fine to a huge red painful swelling spreading up her leg or arm in a matter of hours. I HATE molluscum. Most kids just get one or two but we don't have "most kids", do we? I'd also recommend keeping calamine on them and doing calamine baths. If your ped doesn't want to remove them, you can ask for a referral to a dermatologist. Cantharidin is a bit ppainful so I'd also recommend asking for topical analgesia - the cream kind you apply yourself at home an hour before taking him in.