Thursday, January 26, 2012

Life is a roller coaster, huh?

Every time one of the boys do something super cute, I think to myself that I need to remember it to record on the blog.
Today's cute wonders from the mouth of a 3 yr old was the saying, "Toe Head Dow". Jaxon repeated this to me while pointing up at his toy bins. I thought about it, and sure enough, he was pointing at the bin that is full of Mr and Mrs Potato Heads and he wanted it down. He's piecing words together to communicate, and while other people would have NO idea what he's saying, we do for the most part! He yelled TOE! at Jason this morning, meaning he also wanted to hold a piece of toast like Brady and then promptly yelled, CHHEE! meaning he of course also wanted the cream cheese as well spread on top.

You can't help but smile.

I packed the boys up to take Brady to speech therapy today, and the boys went running out into the driveway when I opened the door. Today's temperatures were very mild around 40, so I let the boys take 5 minutes to explore the snowy yard before packing in the car. Brady ran really fast and then halted just before his foot touched the crunchy snow. He slowly bent down, took his mitten off, and ever so gently and lightly touched the snow with his index finger. At this exact whimsical moment... Jax came barreling from the right and kicked snow up to Brady's face. Ha! Moment over. Brady wasn't sure if he was upset (it was just a little bit of snow) and then realized it was hilarious.
I grabbed them both before an all out snow flinging war could erupt!

So, here are two NOT so cute moments today.

I picked Brady up from Nr. Nick (his speech pathologist) and had a little chat about progress. Or I should say, my feelings of the lack of progress that I'm not seeing. I was given some papers showing the sounds that Brady is making when he's modeled them, and of course the ones he's not. He always says a sound like, "Gake" from his throat. Lots of G's and D's. The therapist told me that he's REALLY leaning toward the diagnosis of "Apraxia of Speech" for Brady. It's a motor speech disorder that requires a lot of work to overcome. This is of course very different than a speech "delay" that the boys are currently being treated for. With a delay versus a disorder, you have the hope that it will just click some day and the child will just take off. With this disorder, it will be a long, long process and hoping it won't be a lifetime challenge where other people will notice something is off in a social or professional setting. You know, all the things parents worry about for their kids.
I just can't imagine knowing what I want to say, but not being able to say it. Can you imagine? He's perfectly healthy, social and smart... there are just very few intelligible spontaneous words. His receptive understanding is there, even more so than Jax's, but the expressive just doesn't seem to be coming. He needs more intensive help, and I know this. We will get it.
I know this isn't new news, but it was sitting nicely in the back of mind this month, and it's being pulled to the front again for me to research my little heart out over.
Apparently this disorder is on the rise in children, and there's a lot of research stating metabolic reasons that are adding to this. I kinda would like an "official" diagnosis before I start going too far into all this, because I already want Brady's doctor to order him a metabolic work up now to see if he's deficient in any areas adding to this brain-to-mouth issue he's having.
I just wish something would be easy or effortless for them going through these first few years.

moving on.

The other not so great bit of news is that Jax is pukey tonight. He was a bit gaggy today, but he held all 3 meals down during the day. I put him to bed tonight and jumped in the shower knowing I had a long night of paperwork ahead of me, and when I got out of the shower, I just had this feeling that I needed to quick check on Jax. The poor kid had vomit everywhere (INSERT TOTAL SAD FACE).
He kept puking, so I helped him with that and then changed out his pj's and his bed. I was really freaked out for a moment because there were brown chunks in his vomit, which was a bit more than I was comfortable with (meaning dried blood in his vomit). I was about to the call the doctor on call, but then I realized he had a little bit of chocolate milk before bed time.
I'm assuming that was mainly chocolate milk that I was seeing, so I decided to see what Jax did from there before calling a doctor and saying that my son who is healing up from pneumonia and RSV is vomiting possible blood, obviously I'd be told to go to the ER. I think if I really thought it was, I'd be there right now without even bothering to call the doctor!

Thankfully Jax has been asleep for the past hour now resting very peacefully, so I will see how he is tomorrow. I was hoping that maybe I just pushed his pump rate to fast today, but I remember Jax gagging up some whateverhehadinhisstomach this morning before he even got his first feed, so I assume he's just not 100%. Granted there WAS a little dried blood in his spit up this morning, but it was the typical amount he has when he's on so many breathing treatments with an illness (dries out his sinus').
No worries, I have my eagle eyes on that kid. If he still has an upset stomach tomorrow, he will buy himself a date with the pediatrician before the weekend. Otherwise, both boys were wrestling, playing tag and come to think of it, Jax ran around the kitchen island about 15 times before bed pretending to be a train... I'm sure that didn't help an unsteady tummy!


D. said...

I'm sorry it was such a rough day, Annie. I hope Jax has a good night and you get some rest soon. I know the roller coaster will be back on an upswing again very soon. XOXO

Kimberly said...

I hate that you had a rough day. I hope today is a much better day for all of you.

The one thing that I have always admired about you is how you will always find a positive. I love how Jax broke down potato to the sounds he can say well. I also love how sweet and funny your boys are.