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!!!

Sunday, July 21, 2013


I had promised Kai for about a week that I'd get him some silly putty from the store the next time I went out, but I kept forgetting (or the store didn't actually carry any.)  He was getting pretty impatient, until I told him that I found a recipe on Pinterest on making Flubber. Of course, that meant that I had to make it that night!

It's a simple recipe which I found on, but you can find it online at other sites. The basic directions are the same, but sizes may vary.

2 cups white glue
2 cups warm water
3 tablespoons borax disolved into 1/3 cup warm water
liquid watercolour, not food colouring    **I don't know what "liquid watercolour" is, but I feel I should, so I used food colouring (shh!) and it seemed to turn out okay.


Kai was hesitant to touch it at first, but then he really got into it!

 He was having a great time playing with it and stretching it out and making it jiggle!

Eden was not so impressed, as you can tell by her expression. She thought it was "Gosse" and kept saying, "eww!"  (Ignore the fact that she is sitting on my kitchen counter. *sigh* This child....)

Kai was a typical boy and thought it was awesome!!!

Overall, a fun crafty project that even a child can do!  Try it out for yourself!

snuggle bugs

I was going through my old photos on the computer and found this one taken in May!  I  was resting on the couch, when the kids thought that it would be fun to snuggle up on top of me!   *smile*

I love my kids.  They fill my heart.

Wednesday, July 17, 2013

Closing the Door

In April, we found out that the test that I was waiting for, the results that I was obssessing over, wasn't even done! Dr T hasn't didn't even request it! Imagine my frustration! :(  So I had to take Rhys back in for more bloodwork, and she had a lot of tests being done! There was a good 8 or 9 vials of blood needed! It was pretty bad!

I didn't tell Rhys beforehand that we were doing blood tests (I did tell him that we were doing "tests", I just didn't clarify how or what type), but he figured it out when we were at the lab, so he shrieked and squirmed. The lab tech (I can never remember what to call them.) had him wrapped up in a tight blanket, while I held his legs down and another woman held his arm, yet he still managed to move around enough to pop the vein! :( The poor boy! At least he was still enough for the attempt on his other arm, but silently crying. I felt bad, but the phlebotomist (that's just weird to say!) commended me for being so calm and relaxed during it, when most parents would be freaking out, so that made me feel better! Rhys was absolutely fine when it was done too!

Fragile X is determined by a simple blood test, looking for the FMR-1 gene. Such a simple thing, and it was taking so long to find out.  If you're like me, you may have heard of the term, but didn't know anything about it. Let me save you some time searching: Fragile X is the most common inherited form of mental impairment. It is caused by a damaged gene, the X chromosome. Due to boys having two X chromosomes, it effects them more severely, whereas a girl only has 1 and only show a few symptoms. According to the Fragile X Canada (lovely, easily read site too) it states:
"Fragile X syndrome can present itself in a variety of ways and in varying degrees. Some individuals experience significant challenges, while the impact on others is so minor they may never be diagnosed.

Symptoms can include:
  • Intellectual impairment to varying degrees
  • Delayed and abnormal speech
  • Attention deficit hyperactivity disorder
  • Anxiety and unstable moods
  • Autism in 20-25% of people
  • Long face, large ears, flat feet
  • Hyperextensible joints, especially fingers
  • Seizures (epilepsy) in about 25% of people

    The effect on boys tends to be more severe. Most boys have mental impairment and have some symptoms of autism.  Girls generally exhibit a milder form of Fragile X because they have two X chromosomes — one that works properly and one that doesn’t. As a result, females are able to produce enough of the FMRP (Fragile X mental retardation protein) to fill most of the body's needs, but not all. Autism is less common in girls and only one-third to one-half of girls have significant intellectual impairment. The rest have either normal IQ or learning disabilities."

Rhys has a few of the symptoms, but I still wasn't too sure. I thought that it was highly possible and was just waiting for that phone call. I read that it could take 6-8 weeks to get a diagnosis, so I just waited. And waited. And searched online. And read blogs. (some really great ones I loved to read are: A Day At A Time, by a mother with an older son and younger daughter with FXS, and   AwareneXs, about a boy with FXS. Please do check them out to learn more about this Syndrome and these wonderful children.)   Sometimes I think that we'll find nothing and that everything will come back negative. But  instead of filling me with hope, I am filled with dread. My "Mommy Gut" tells me that there is something....but what? The waiting and searching makes me nervous.

I found a whole bunch of Rhys' old paperwork (or most of it)...his past assessments, apts with IDP, Speech Therapy notes, everything I could find....and put it all into a binder. Even old journal entries on him, like detailed doctor instructions, etc at the hospital, but in my words and memory, plus my thoughts. Anything with info on his development. I was proud of myself for putting it all together! (finally a finished project!) And even Dr T was impressed and copied a few of my pages for her own file. *pats self on back* I was quite sad to read old doctor's notes, though. I had completely forgotten that when he was at BCCH at 3 weeks old they also did some genetic tests on him!  I read over their final assessment letter that was CCd to us in 2010 and was felt a rush of emotions; sad, surprised, worn. (again concerns about his "dysmorphic features") But if their tests didn't show anything abnormal then, why would tests done now help?

But Dr T sent a referral for us to see Genetics at BC Children's Hospital again. We got a form letter saying that there was a 12-month wait list to be seen, but if I filled their forms it would help. Good grief!  It's 5 pages on the pregnancy, what I feel are concerns, family history on both sides...tons of tough questions. I struggled with some of it. Some I can't quite answer because I can't remember, such as "when could he feed using a spoon? or scribble a picture?" Uhm, I don't know. I think those were at normal times. But I remember he couldn't walk until a week before his 2nd birthday, and he couldn't put 2 words together until he was 3 1/2 years old.  I had to fill out any concerns I had about his eyes, skin, throat/neck, heart, blood, lungs, endocrine system, bones...etc. and that was hard too. I don't know if I am "concerned" about these things, but I wrote down anything I could think about that may help, like that he has eczema, prone to spontaneous nosebleeds, weak muscles, hypospadius, constipation... *sigh* It is so hard writing out things like this. How do you look at your child and try to pick apart all the things that may be "wrong" with him? And then list them? It's heartbreaking. The question that took me the longest to answer was this one: "What does your child have the most difficulty with?"

I don't know what he struggles with. I honestly did not know how to answer that one. He is delayed. He acts younger than he should. His abilities are lower than typical. But the "most difficult"???  I finally filled it in similar to the very next question, which was: "Does your child have any behavioural difficulties? No? Yes? please describe..."  I said that he is impulsive and doesn't understand consequences. He lacks comprehension and understanding in simple instructions. His behaviour is immature and can be difficult on others as he can get hyper and doesn't understand what is acceptable or proper.

It is hard to write down all the things that make him different; to make a list up of all the things that aren't "right".  But I finally finished the form and will photocopy it for my own binder before mailing it. Maybe we'll get in sooner than later.

At our appointment with the pediatrician in June, we got a few test results back. Everything is coming back normal or negative. Which is good. His IgA, IgM are good, but she wants to do a stool test because his IgE was elevated. (those are all things that effect his Aunt, so she is often sick. It's complicated.)  ---yay, a stool sample, I'm so excited!  I'm glad that nothing is looking obvious so far. He appears healthy according to his blood!

A few times, Dr T mentioned how we were "waiting for genetics".  I think she's at a bit of a loss for what to do next. That's the feeling I got in May as well. She has sent him for all of the obvious tests and everything is looking normal and she's not too sure what else to do. Finally, I asked about the Fragile X test. I wasn't expecting anything, since it had only been 5 weeks, but I was hoping. She nonchalantly told me, "oh, that's negative too!" I wonder if she was even going to tell me if I hadn't asked! I'm happy the results are in so soon, but I'm frustrated at how she shrugged it off! I have only been *slightly* obsessed with FXS since February!!!  And, the thing is, I was really sure this could be it!

So I feel like a door has been closed on that. And that's a good thing. But also a sad thing.  If it's not that, then what?

Friday, July 5, 2013

What it's not

So, we've been seeing Dr T monthly since December. She's our crazy pediatrician. While I had a lot of apprehension in seeing her again, I have to admit that it hasn't been too bad lately.  Other than her habit of looking over his file while we sit in her office and wait; that's *slightly* annoying. And that she doesn't explain anything to me; that's incredibly frustrating. But, I mean, in a general comparison to how she was 8 years ago. She's not as bad as that.  She's asked for a lot of blood work to be done on Rhys, but not nearly as many strange (and unnecessary) tests as we did for Kai (like the 72 hour stool collection. Wow, that was fun!)  I just wish that she'd be open and informative with me. It's tough leaving her office with more paperwork and not knowing what she was looking for or testing.  Like in January.  I looked over the form for the lab and felt ill when I read her words:  slight dysmorphic features, triangular facies, ftt, pointy insisors (like mom), possible Williams Syndrome?

I was wondering WT?

Triangular facies? Slight dysmorphic features? What the heck do those mean? Well, of course I had to go to Dr Google to figure it out!  Just so you know, "facies" is a medical term, so if you do your own search you will only find medical pages as a result. (which is great if you can read those!)  If you google, 'triangular face', you'll get results on how to decide on a haircut or glasses for that shape. So those got me no where! Dysmorphic features just means that something isn't symmetrical or "normal". It could be the eyes, or ears (one lower than the other, etc) or mouth. It really is vague.

So what is "wrong" with Rhys' face? I don't know. He looks "different", but it's not obvious to me. I can't pinpoint it. He has epicanthal eyes (which is common in Down's Syndrome and Asians, but can happen in preemies as well), which is where the inner corner of the eye has a bit of a fold. It could mean a genetic abnormality, or it could mean nothing. Bryn, also a preemie, and Eden, not a preemie, have it as well. It's not too noticeable on any of the three, I think.  So what does that mean?  Rhys also has large ears, but so does my Opa, so  I assume that's where it comes from! So I don't know if any of this means anything at all.

I spend most of my January learning up on Williams Syndrome. I read blogs, I read articles, I lamented on the poor Canadian site, I watched youtube videos on it and I could see how Dr T thought it could be a possibility. It consumed me. And frightened me. As well as fascinated me. Williams Syndrome is a genetic condition that can result in heart problems, developmental delays, and learning disabilities. Despite that, those with WS have great verbal skills (although many do start out needing ST as a young child), incredible social personalities and a talent for music.  Those with WS also have a similar physical appearance, which are a small upturned nose, long philtrum (upper lip length),  wide mouth, full lips, small chin and puffiness around the eyes. Some blue-eyed children can have a lacy "starburst" pattern in their iris.

When I read up on it and saw the photos of those with WS, I noticed that he didn't have all the obvious physical features (such as full lips and upturned nose), but there were other symptoms that he did (puffy eyes, small chin, social) and that made it difficult for me. I went between thinking he had it to being unsure.

In February, we found out that the FISH test came back normal. No Williams Syndrome. And as much as I was relieved, I was also sad. It's not that I wanted him to have a rare genetic condition (only 1 in 10, 000 have it)  but if he did we'd at least have an answer and could move on. I just wanted to find something so that we'd move on to a specialist and not have to see Dr T anymore! But instead, we were back to wondering.  Plus, the more I read about WS, the more I loved those with it. They are endearing and friendly and so happy. They made friends wtih every one and no one (literally) was a stranger (which can be scary for parents to deal with). Sweet sweet people.

February also got us a new pediatrician, since Dr T was on holidays. A Dr Jekyl. I'm serious! You'd think she would've changed her name or something; imagine all the jokes at her expense! :p  But I loved her instantly! She was just filling in for the week though and didn't have her own practice (phooey). She was friendly and actually explained things; actually talked to me. Wow. Imagine that!

According to all the blood tests done in January, Rhys' iron was normal, he's not anemic, his protein levels, liver, thyroid and blood vessels are all normal. He doesn't have celiac either (something I didn't they were testing for). We were still waiting on the karyotype results though.  Oh, and Dr T was looking a Fragile X. And we may get referred to Genetics. And Dr J would put in a referral to the Centre for Child Development preschool (which is a huge centre for children with severe developmental disabilities that is literally down the street from our old house)  It was a busy and helpful visit!

In March, the karyotype results still weren't in. I didn't know what answers it would give us, or if it would even help at all, but it was something to cling to.  In April, we found out that the one test that I was waiting for wasn't even done! She didn't end up requesting it! grr. Fragile X is diagnosed by a simple blood test, by lookng for the FMR-1 gene.


More blood tests. More waiting. If God is trying to teach me patience, it's a slow process. I'm trying to learn to be okay with everything, and to trust in His timing, and to wait for it to fall together.  I had a few friends remind me that having a diagnosis doesn't change Rhys, having a title doesn't make him any different, he's still the same Rhys we love. And that's true. But I wasn't looking for a 'new Rhys'. I love him the way he is now. I just wanted to know what we are dealing with, so I can get the help he needs, if he does need it.  I'm trying to learn patience as we wait for information to come in. Whatever happens, whatever they find or don't find, I am confident that God knit Rhys together with intention and love, and he is perfect in His sight. And in mine too.


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!

Monday, July 1, 2013

Joe the Canadian

This popped up on my FB wall, so I had to share it here. This was such an iconic commercial in the 90's, put out by Molson Canadian beer! I love it!!! :)

Happy Canada Day!!!

 "I am a Canadian, free to speak without fear, free to worship in my own way, free to stand for what I think right, free to oppose what I believe wrong, or free to choose those who shall govern my country. This heritage of freedom I pledge to uphold for myself and all mankind."

(John Diefenbaker, part of his speech on July 1, 1960.)

Happy 146th Birthday, Canada!!!

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