Updates on the Boys

It is my firm belief that the medical system in our country is designed to wear you out and make you give up trying to find appropriate care. This week I've spent way too many hours on the phone trying to find a specialist. I am beyond frustrated with the whole thing.

I had a long, drawn out explanation of the drama, but I erased it. It pissed me off all over again witting it out. Grr. Just know that I spent WAY too long dealing with stupid people. I think I've finally got things worked out to the best of my ability for now, but I do have still have some work to do to get things the way I want them.

So that brings our count of medical appointments for the big boys this summer to:

• 2-3 therapy appointments a week for remainder of the summer (swimming for an hour one day a week and PT/OT twice a week)
• orthotics casting (AFOs to be completed in approx. 3 weeks. We'll have to go back for the fitting when they are done.)
• CT scans scheduled for Aug. 1 at 7:15 am at the children's hospital 1.5 hours away. That will be fun for sure!
• Neurosurgery appointment back at the children's hospital the following week (yet another example of stupidity in the medical world)
• Orthopedic appointment (more STUPIDITY with this one, but it is done for right now. Need to get a referral from our pediatrician -I haven't even settled on who I want as our new ped yet- for the children's hospital for a second opinion.)

I haven't even started our search for a new pediatrician outside of casually asking for recommendations from people on FB. I want a ped who would be comfortable with their more complicated medical file but would still treat them like typical kids for the general stuff. (We know the complications well enough that we just bypass the ped and head straight to the children's hospital anyway.) I also still need to schedule an appointment with the neurologist.

Whew. No wonder I am always tired! That's a lot of crap to do.

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The big boys are going through a growth spurt. This is not a good thing for their legs, as growing tends to tighten muscles. We have lots of stretching to do.

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Sh.awn is a screamer. He has one of those screams that could shatter glass, and he is not afraid to use it. It drives me insane. INSANE. He knows it. This, my friends, is a bad combination.

I did finally get him potty trained (for reals, no going back kind of trained) this month. He is not really able to get himself onto the toilet without help. Then he decided that only I could take him to the potty. He would not let Is.aac or my mom take him. It was me or no one. The problem with that is that I work and was away for a good majority of his day. He also decided that only our toilet was pee worthy. Again, he was at my mom's for a good majority of his day.

The pull-ups went on and stayed. When I was around, he'd go on the potty. Otherwise, he'd go in his pull-ups. I got lazy. He got lazy. The pull-ups became the norm rather than the exception. Sigh.

The first day of summer break, I took pull-ups away. Thus commenced a long two weeks of peeing in his pants FAR too many times. I banged my head against the wall. I vented and was frustrated. But, BUT now he is good to go. He will let anyone take him and has been to public and other private toilets outside of our own. Score!

Anyway, with that behind us we were then able to focus on more pressing things like Project Stop the Damn Screaming, Boy. We are making slow strides. He's a stubborn one.

The boy has grown a pants size and shirt size. He's still on the smaller side, but he's getting there. The growth has been translated to tighter than usual muscles in his legs. The good news here is that he does stretch well, and I think the swimming is doing wonders working on his strength. The new orthotics will help even more, I think.

He's still working on his walking. He's lost a lot of extra support on his walker lately, which is really good news. His stamina is improving ever so slowly, but I'll take it.

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Ja.son is too smart for his own good. Ugh. If I say anything to that boy, I can almost see his the wheels in that brain of his turn. He is a master negotiator, but at the same time, he's not afraid to throw out a quick little tantrum for good measure. Sometimes I think he's channeled a teenage girl with the drama his dishes out.

Oh how he loves the drama.

He's taught himself to read and is finally working on mastering his letters. (Fine motor skills are hard for him.) He asks a million questions about everything. He does not accept the "I don't know" for an answer, either. He insists I confer with my good friend Siri for the really hard questions. lol.

Ja.son's grown somewhere around two inches in the last month. This has translated to struggles with tightness behind his knees, which makes him crouch when standing. We have lots of stretching to do with him also. Do you know how kids love doing things that mildly hurt and are uncomfortable? Yeah. Me neither. He is not a fan of the stretching, and I have to say that I am limited on ways of making that kind of thing "FUN!" Sigh.

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Mr. Jack is now walking like he's been doing it all his life. He is running, climbing, and almost to the point of jumping. (Jumping comes 6-9 months after learning to walk, so he's right where he should be as far as that goes. He has only been walking just over 6 months.) He loves the slide, fearlessly going down our slide with our without my presence.

His talking has taken off. He literally talks all day long. In context I can understand what he's saying most of the time. There are times, though, when I have no idea what he's trying to tell me. Oh, how that pisses him off!

He knows some colors, can count to twenty, knows quite a few animals and their sounds, loves to read and point things out to me in his books, sings along with me on several songs, and has taken to drawing on his doodle pad thingy.

I would say the two areas for him to work on would be 1) articulating better in his speech - I don't think what he's doing is atypical. He does correct to some degree if I say the word for him and he repeats it. and 2) good grief this boy needs to branch out as far as food eating goes. He will eat waffles, peanut butter, and fruit. Occasionally he'll eat banana bread. Period. Oh, and he will eat the veggie pouches things, too. I'm to the point of not fighting him over it. Eat a waffle every meal until you're 50 if you want. I don't care.