Friday, July 5, 2013


Rhys is now five. FIVE!  Crazy!  He is still my sweet snuggly boy who is affectionate and loves to lay in my lap. He is also very silly and loves to jump onto things and spin around. He still thinks that if he covers his head he is invisible, and so he'll squeal in delight when you "find" him. :)

He is very sweet and I loves him so.

But his behaviour isn't one of a kindergartener. He is immature and it's hard.

I've mentioned a few times recently about his delayment, but I haven't told you the whole long process we're going through because of it. So, grab yourself a cuppa and make yourself comfy as this is going to be a long story. (when aren't my stories long?)

It starts out on November 11th, 2012 (I told you that last year was a rough year for us medically) when I took Rhys in to the ER because he had a chest cold and looked so ill. Actually, no, I guess this really started a good 3 weeks earlier...if not even earlier than that, but lets not get too technical. For this particular part of the story, it started in October, when he was sick with a cold for three weeks. He had a runny nose, fever, cough, the usual cold symptoms. But even when the cold went away, his cough did not; he just kept coughing several times in the day. However, he wasn't getting any worse, so I didn't take him in to see the doctor. (I'd consulted with Dr Google who suggested that I don't need to take my child in unless they get worse; coughs will loosen things up and resolve on their own. I just needed to monitor him. Which I did.)  For three weeks, this cough kept going and I kept watching and wondering what to do.

When the Long Weekend hit, Hunny went away camping with Kai and his BFF David and David's father, who happen to be good family friends, since that's what Kai wanted to do for his birthday.  Of course, that's when things take a different turn. Things ALWAYS happen on a Long Weekend here!!!  Rhys' chest cough got worse, much worse, and he spiked a fever, and his breathing got raspy.  I had given him a few nebulizer treatments (BEST purchase our family has made!!!) but it didn't seem to do much difference. Between me giving him those, he slept. He hardly ate or drank, so I was a bit concerned.  When the Boys returned home, I packed up Rhys and took him to LMH. I needed them to rule our pneumonia.  (Ever since he had it as an infant, I've been slightly paranoid about it hitting again.)

At LMH, they checked his temperature, which was a shocking 104! WOW. They also gave him more breathing treatments and put in an IV, which he hardly batted an eye at, as well as some blood taken for tests. (you know your child is sick when they don't even notice the needle being poked into their arm!) Poor boy. Before he was going to be sent for a chest x-ray, the Attending ER Pediatrician said that he would be admitted to the hospital. :(  But by the time the x-rays came back to the doctor, he was starting to look better, thankfully, so I wasn't too sure what would happen. (He was alert and the nurses had fun blowing up gloves into balloons for him, and giving him stickers to decorate with!)  She said that the x-ray didn't look as bad as she expected it would---she thought pneumonia as well, but it wasn't so obvious. His lungs were "wet" and his fever was elevated and he needed breathing treatments every other hour, but it didn't look too bad on the pictures. So he was still being admitted to LMH. *sigh*  We got a room on the pediatric ward at 11:30pm, and were still both wide awake at 1am; we tried to sleep but were kept getting woken up by the nurse doing her hourly checks on him. It was a rough night!

The next day had Student Doctor Handsome come in, along with Dr T. *sigh*  I liked Student Dr Handsome, I mean, Doctor Daniel. :)  But seeing Dr T made me cringe!  It made Hunny positively angry when he heard! I was willing to let her do her job, but he wanted me to tell her that he didn't like her and we didn't want her overseeing his case. But I'm too nice and couldn't see a point in saying that at all!  Besides, I talked to Dr Daniel more. :)  He asked about Rhys and wanted to know every possible detail---his birth, his development, what does he eat, his health, what he plays with, everything.  And I used that opportunity to voice my concerns: Rhys is sweet, loveable, and a lot of silly fun, but for the longest time he's been delayed. (I guess since birth, but I hadn't really noticed that before until recently, when I started to connect the dots) I can't pinpoint it, but he's always been younger than his age by about 1.5--2 years. My "Mommy Gut" tells me that something isn't quite right. :(  We would tell him to do something (ex: 'pick up your jacket and hang it up' or 'put the cup into the sink') and he would look at us blankly. It's as if he had no idea what we meant. He just didn't seem to comprehend our words! And it was difficult for us. We knew he could hear us (his hearing was tested at birth and at 2 1/2yr old) but he never reacted. He wouldn't even try; he would just look blank. It's not like he attempted to follow our instructions and was wrong (ex: putting his jacket into a different room or picking up the cup and giving it to us), he would do something silly instead, like running and jumping on the couch or spin in circles in the living room, laughing like a maniac!  (I do recall Kai during his Ages & Stages Questionnaires that IDP would do on him. When it came to a question where he had to answer verbally, he would jump up and motion with his finger for us to wait, then run off to his bedroom. Sometimes he came back with a random toy or something, but sometimes he'd just run off until we had to call him and coax him to come back!  It was cute, but also unnerving!)

It felt good to be able to tell a doctor this. Surely it wasn't all in my head. Surely this was something important.

Dr T was mostly curious about his size, though. She found him to be very slight and that made her concerned. According to his height and weight, he was in the Bottom 1-3%!!!  I guess that's not cool, but I couldn't help but think that 'someone has to be at the bottom'!  If they didn't think being 1-3% was acceptable, the growth chart would be higher and different. Am I right?

On Day 3 of being at LMH, we were finally discharged as Rhys was well enough. He didn't technically have pneumonia, but he had some sort of virus which made his heart race and his chest to heave, so Dr T treated it like it was. But she still wanted to investigate his size and asked us to follow up in a month at her office.

I had feelings of dread and was so nervous about that. Hunny wanted me to not go, or to tell her off, and ask our family doctor for a referral to a different pediatrician. But I didn't want to go through the whole process of retelling Rhys' story to someone new. At least she had already seen him.  But we have such a stressful history with this doctor. She was the Pediatrician that saw Kai when he stopped growing at 9 months old; the pediatrician that we quickly grew tired and frustrated with because we'd see her each month, and at each appointment she'd spend a good 5-10 minutes reading his file, trying to remember who he was; and she wanted to do all these strange tests on him (like doing a 72 hour stool collection! Are you serious???), where he'd only have 1 or 2 of the symptoms for it (out of many). It was an incredibly stressful time and we were so relieved that a random x-ray caught his enlarged heart at 15 months old. So maybe you can see where Hunny's anger comes from, and my apprehension. I am grateful she found Kai's cardiomyopathy, but was a terrible time with her!

As per usual, our first appointment with Dr T in December was disappointing. She had read his file while I sat politely, as she forgot who he was and why we were there. Then she had me tell his story again, and asked me a ton of questions. Then she sent me home with paperwork for a bunch of blood tests, no explanation of what she was looking for.  She was absolutely shocked that he wasn't seen by our family doctor on a regular basis, and how shameful of me, but we didn't do a growth chart on him!  No, my doctor didn't check him and plot his growth for me. No, I didn't take him in to see the doctor often, only when he was actually sick, imagine that!  So for all this time, despite having 4 other children, I was doing it wrong!  I didn't know that you should take them in regularly just to have his growth and development charted!  He was being seen by Infant Development, and I took him to the walk-in clinic for basic quick things, like sudden ear infection, etc.  :(  I went home in tears. I felt like she was questioning me and blaming me for him being small. :(  I absolutely hate it when professional treat you like garbage and get annoyed at you for not understanding their field. Hello? You're the professional, not me!

I'm not worried about his size, to be honest. All of my children were the exact same weight he they started kindergarten (31-35lbs). Even my Mom likes to remind me that I was only 35lbs in K, so maybe, just maybe, it's a family trait to be oh-so tiny and cute?!  It does seem to be Dr T's biggest concern, though, and she's labeled him FTT. UGH!

My biggest concern is his behaviour. My question is what is causing his delayments? Is he just immature (and will outgrow it eventually) or is there more?

So we've been seeing Dr T monthly. Some visits have been slightly useless (like last month) but some have been interesting and things have been able to be crossed off as information comes in. But I still find this doctor too frustratingly evasive though. I can tell she's perplexed as well, and she's often looking over Rhys physically and wondering what to do. That doesn't bother me at all, I just wish she'd express her thoughts. I'd love to hear more "well, I'm wondering about this..." or "I want to test for ..." It would be a lot nicer than having to decipher her thoughts off of blood requisition forms! :(

I'll mention all of the tests in the next post. I'm sure this one is long enough!


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