Thursday, July 25, 2013

doctors, labels and not smart football players

I had a some-what funny conversation with my Dad a week or so ago. He had popped by since he was in the area and visited for half an hour. It was a nice surprise!  He was mentioning that he needed to do a blood test before his doctors appointment that week. I said I had to do a test on Rhys before his appointment next week as well. My Dad wanted to know why he needed to go to the pediatrician, so I said it was because he's delayed and we wanted to know why. His response was "So what? Some kids are not as smart as others."  Uhm....ok. Thanks Dad, that's great.  "He can play football. They're not very smart!" *snicker* Ok, good to know!

Yeah. My Dad comes from Old School thinking.

I think it's great that he can be so accepting that my son may not be as "smart as others", but this isn't about his intellegence, it's about his being behind by a few years. (as Hunny put it.) For me it's about finding out if there is anything we can do for Rhys, and if there is, let's do it now please!

We don't live like our parents did--where handicapped children were just the "retarded sibling" who couldn't do anything and had no chance. Today we have more resources available. And I'd like to use what I can to get Rhys as caught up as possible!

I wasn't offended or hurt by my Dad's comment. I did appreciate that he was so nonchalant about the whole thing and that it wouldn't be a big deal if Rhys were special needs in the end. But it did make me shake my head. I guess it's a good thing I've got 4 other "smart" children! LOL *smile*

It's hard to explain to family and friends who just don't see it as we do. Sure, R is immature, but so what, right?  Maybe they're being kind and making excuses is easier for them. But I made excuses too. It wasn't until I pulled all of his old medical notes and such earlier that I was faced with it. Rhys was at a 30-36ms range when he was 40ms old, according to a Gessel Developmental Stage quiz. (that's 2 1/2-3yrs when he was 3 1/2) I kept saying what everyone else said, "he'll get it one day", or "he has older siblings who help him", and "he's a boy!" But finally I had to stop and realize that he HADN'T caught up. And I don't know if he will or not. He may always be immature, but then finally "get it". I don't know. But as a parent, I need to know what are the expectations. When he screeches at me and wails "nooooo!" at every answer he doesn't want to hear or seem to understand, is this something that I need to correct or is it something that comes with his undiagnosed issue?

In May, Dr T added another label to Rhys' chart. She didn't tell me, of course. I just saw that it was written on the requisition for bloodwork. She wrote that he was FTT (failure to thrive. ugh I hate that title) and GDD. That one made me stop.  I had been looking at Global Developmental Delay for some time, but I had always shrugged it off that I didn't think he was. He could do more than what was listed, I was sure! But then I found this list on Kids Growth, and my heart hurt.

A Global Developmental Delay is a  general term used to describe a condition that occurs during the developmental period of a child's life (birth to age 18).
Common signs may include:
  • delayed acquisition of milestones: the child is late in sitting up, crawling, walking
  • limited reasoning or conceptual abilities
  • fine/gross motor difficulties
  • poor social skills/judgment
  • aggressive behaviour as a coping skill
  • communication problems

But since she didn't mention this to me at all, I don't know what to do. What does it mean? What should I be doing? ARGH!


This week we had our monthly visit with Dr T, except that it wasn't her, it was her locum; she's off having her 3rd child.  This doctor came from the Children's hospital and had an agreeable disposition which I liked and trusted.  I don't know if I'll see him again though, since he gave us a month off for our next appointment! We don't go back until September! Woohoo! (see, I told you  they are running out of things to do for him!)  The doctor wants me to contact the Centre for Child Development again to make sure we are on the wait list for preschool, just to keep our name out there and to confirm with them that he is attending preschool and not kindergarten.  But I feel torn about this.  See, as much as it would maybe be good to be at the Centre, it just does not fit in with scheduling. The Olders attend school in Langley, and the Centre is in the complete opposite direction in Surrey. There is no possible way I could make it for the morning class, or make it to pick up the Olders from school on time if R were in the afternoon class. Which is why we decided to go with the preschool that is at the school the Olders attend. But I struggled with the thoughts that if we truly were interested in Rhys' best, we'd make it work for him to go to the preschool at the Centre (if we were to get a spot, that is)...oh the Mommy Guilt!

At first, Dr N wanted me to contact the Speech Therapist about getting him back in for a consult. They saw him last in December and said that he was doing fine and that we could take the winter off. They'd contact us again in March. Except they didn't, and I didn't call them either since we were busy with Dr T and he was speaking so much better. (and, frankly I was annoyed with them!) But now he is five and I don't know if he's "graduated" from their program or not, or could he go back since technically he isn't registered at any school for the Fall? (you leave Speech once you start school, so you either graduate and are now at par with your peers, or you seek private ST, which is what we had to do for Kai.) They should've contacted us again since he was turning five and starting kindergarten age, as they like to work hardest on the older kids in the spring. But I'm sure if I call them, they'll make it out to be me who should've called them. *sigh* So I wasn't looking forward to that. But then Dr N decided to not have me call the ST, but to call the Centre. I'm trying to decide which one I'd rather do!

Regarding his stool test, everything is normal. Yay. Not too sure what that means regarding his elevated IgE, but I'm not going to worry about it. So far everything is coming back normal. Which is great in that he's not unhealthy, but it's sad in that we don't have anything else to go on.

In other good news, I FINALLY got a hold of Kai's cardiology reception!  I had only been trying to contact them since the end of May! I had left so many messages on their machine; I was starting to get rather ticked off! I had our doctor fax in our referral to see the cardiologist (and I know that would've been done that afternoon, as her receptionist, Theresa, is good!) and so I was just waiting for a date for our appointment.  Except, things got even more frustrating.

Kai needed refills on his prescriptions. (he's taking Ramipril and Carvedilol currently) but when I called our pharmacy, his one medication had expired! Oh great! So I added that to my message on the cardiologist machine! Two days later. the pharmacist called me to say that they couldn't refill it because our cardiologist was on holidays, and oh, it was time for Kai to go back in for his annual checkup! I admit that I was a *bit* annoyed at the pharmacist for informing me of that, as if it were my fault he hadn't been in and that his prescription expired!  I let her know, somewhat tersely, that I was aware and I had been trying to call since May and hadn't heard back from the doctor's office despite all my messages!  The pharmacist's response was that maybe I needed to go in to the walk-in clinic for a prescription renewal. *sigh*

I did get him an appointment with our regular doctor instead of having to go see someone at a clinic and needing to go over all the little details, ugh!  But then two days after that, the pharmacist called me to let me know that one of the cardiologist's associates approved our medication, yay! Oh! And that afternoon, I finally got a hold of the receptionist! And I was nice and polite and didn't tell her how frustrated I was at her never calling me back! Instead I let her book the appointment for next month (when Dr H is back) in her cheery voice! So at least that is done!!!


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