unexpected outcome and our first IEP

I met with the Learning Assistance Coordinator at the school and she had bad news for us. Unfortunately the assessment report from Fraser Developmental Centre wasn't enough. First, they didn't receive it in time to apply for school support (which needs to be done by the end  of September to  register with the Ministry of Education) and the short report they got didn't have enough info on it. Second, upon receiving the full report, the LAC and SEC (Special Education Coordinator) went over it carefully and they aren't able to apply for extra help for him when it comes time in February 2016 either (the second time schools can apply).

So no Aide for Rhys.

At least for now.

The wording that I struggled with they did as well. ("You may wish to identify him as having....") The big issue they had with the diagnosis of Complex Developmental Behavioral Disorder (CDBC) is that Rhys doesn't completely fit that description either. He does not have any behavioral problems. That is, no aggression, or self harm, or class disruptions ,etc. And that Behavior is an important part of CDBC. So they didn't feel that they could properly label him that way. Even though as I was told they really wished they could.

*sigh*

To say I felt disappointed would just slightly address my feelings. I felt it was a step back after our gains lately. And I was worried about Rhys not getting the help that he needed. But I have been assurred by the LAC that while Rhys may not have an Aide, he will always have an  IEP. And they will always have him placed in a classroom where there is already an Aide, who is able to help him as needed. That encouraged me.

Despite that set back, I do not feel that Rhys will "fall into the cracks" like it felt last year.  He has such a wonderful teacher (who R and I both love) and the same Aide in the class as last year (who I've been talking with) He also has this report from Sunnyhill and they can't ignore that. But the truth is that Rhys really is doing well. Yes, he is about 1-2 years behind in a lot of ways, but he just needs direction, and he doesn't need that all of the time. So I understand the confliction in this decision.

When I met with the Learning Assistance Coordinator and his teacher last week for our first IEP meeting (Independant Education Plan) I had a bit of nerves. I wasn't too sure what to expect. And it's funny how despite not knowing for sure, you can always end up feeling as though you weren't really expecting the outcome in the end. The meeting was different than I thought it would be. We started with his strengths (which I think is always a good place to begin) and then his needs, and then delved into the many categories where he needed help. With each heading (Communication, Social/Emotional, Acedemic, Physical/Independance) we discussed areas that he needed to strengthen and the LAC gave us solutions on how to meet those concerns. It really wasn't a surprise, really. Nothing was said that I didn't already know, and thankfully most I had already discussed with the Learning Assisstance Coordinator so it felt more like an 'official recap' for the records. So un-climatic!

I am going to see Rhys' pediatrician and see if he would qualify for more help elsewhere, as we agree that Speech Therapy and/or Occupational Therapy would benefit him. As his teacher said, learning disabilities don't separate kids too much, but something they see will eventually set him apart, such as his inability to run properly or do simple things like skip. Maybe there is a program that we can get Rhys into that's locally run and doesn't cost a lot.

I really do think this year will be a good one, though. We are making small steps. He is in the right school, and placed in the perfect classroom, and he is loved by many.

Thankful Thursday

Welcome back to Thankful Thursday, a feature started by Louise at Talk Nerdy to Me, where we look back over our week and remember our blessings.  It is so good to see all that has happened, especially if you have had a particularly tough week. Being grateful is good for the soul. Here are just a few things that I am thankful for...

1 .Fun Mail

I got such a wonderful surprise in the mail this week from a friend in Scotland. She had posted on FB that there was a Doric version of the book Gruffalo, which is a dialect where she lives. I thought that was pretty cool and asked her to record herself reading it. She offered to send me a copy instead. And she did! I wasn't really expecting her to. I was so happy!

 I could read the book in my head, but reading it out loud was a bit more difficult! The kids listened, but they got confused. (not surprising)

("a mouse took a walk in the wood. A fox saw the mouse and the mouse looked good.")

  Abi and I had fun reading it, although she sounded more like a pirate to me! HAHA

2. rebate cheques

I got a letter from ICBC this week (the Insurance Corporation of BC, the company that you have to insure your vehicle with to be able to drive it legally here.) that they had been overcharging me (oops. dang corporation) I am thankful for the cheque they sent though. It is enough for us to be able to rent the uniform Abi needs for her choir performances.

3.International Festival

The grade ones have been studying different countries this unit and have come together to do a few fun events. They had a few soccer matches (or, rather, Football in most of these countries) and ended with an International Feast, where each class hosted foods from their country. Rhys' class studied France, so some parents brought in crepes, croissants and quiche---which was impressive because my mind went blank and all I could think of was French Fries, haha!  The other countries represented were Netherlands, Guatemala, and Italy. 

It was a fun afternoon!

4. acceptance
  
I think just about everyone knows by now that Rhys is a huggy boy. He loves to give random hugs to people and he will love and hang on you if he knows you. I think it's great about him as it shows his genuine love for others. But I know that people we don't know may not enjoy it as much. Such as classmates of Abi's. But Rhys still runs up to them and hugs them and wants to hang around them!  

I am so thankful that Abi's classmates are okay with that. They not only endure his clinging, but they are so kind that they even encourage him. It warms my heart to see that they don't look down on him, but accept him. I had to pull him off one girl as we were leaving school the other day because he kept hugging her leg! She laughed it off thankfully.

5. balloons!

We got confirmation this week that my niece is now allowed to have latex without having an anaphalactic episode!  Woohoo!! After 8 years, she can now play with balloons!!!  This is such an amazing gift! We all kind of take it for granted that we can play with balloons at parties or not have to worry about what the rubber balls in school are made out of or avoid certain foods that cross relate.  I can't wait to be able to give her a balloon!

6.  visits with old friends

And when I say "old", I mean Dear...not OLD! haha.

Shannon and I have been friends ever since we worked together 14 years ago. (gosh, now I feel old!) For a while there we would get together monthly, but she started to full-time work as a nurse and life got busy for me and we weren't able to anymore. After a few cancellations, we finally met this week for tea and a visit. My heart is happy again. (having hugs from her daughters, saying they missed me, helped too!)

 7.  friends 

If you were to ask Eden who her best friend is, she'd probably say Joey, our next door neighbour. We are so blessed to have this family beside us. But with night coming earlier now and so many after school events, they haven't been able to play as much; they look forward to the weekend!

8. gaming night

For Kai's birthday party, he invited his friends over for a gaming night. We got him a PS3, and we borrowed an old-school Nintendo and an extra tv, and a friend brought over his Ninetendo 360, so they had plenty to do! We fed them and they played games and had a lot of fun. I had to laugh though that by the end of the night, they were all on the couch with their own devices playing Minecraft together!  It was a fun evening! (and cheap!)

(this is the picture we used for his invitations!)

9. extra long weekends

My kids are out of school for two days this week, giving them an extra-long weekend! I love that! As much as I love their school and I love that they can go, I also love those special days where we can relax and sleep in and stay in our pjs!

10. Colourful Garden Carrots

I am so thankful that we had a bit of a garden this summer that yeilded a lot more beets than expected, as well as beans and these carrots. I love all the fun colours! (I think they were called Rainbow variety, but I could really be totally wrong. I don't pay good attention to these sorts of things)

 So that's my week in a nutshell. How about you? What are you thankful for? 

Another Specialist, Another Group

Her first question after we introduced ourselves was, "How important is it for you to have a diagnosis? How much do you need to have one for him?"

It caused me to stop and consider. What is the right answer she's looking for? What do I really feel? How do I even express it? I answer truthfully. "If searching for answers isn't going to get us anywhere then we don't want to do it. We don't want to waste your time, or our time, and we don't want to put Rhys through more trauma. We just want to know if he has something so that we can help him out in school or when he's older."

The doctor nodded encouragement. She seemed to understand what I was trying to say.

Our goal is to see how we can support Rhys and bridge that delayment gap. But if Specialists don't think there is any reason to continue searching then I guess we'd have to be happy with all that we know now. The Developmental Pediatrician we saw at the Fraser Developmental Clinic said that we had done a good job with getting answers for Rhys and that we had exhausted a lot of routes, and that we shouldn't feel that we needed to look further. I think that she meant to be encouraging but we didn't cancel our appointment with the Specialist at TIDE BC.

TIDE BC is the research team based out of BC Children's Hospital that our regular pediatrician referred us to. (mentioned HERE) I was excited to see them; it sounded promising. They focus on treating and preventing Intellectual Disabilities (ID) through diet and/or drugs. They work alongside the Genetics department at BCCH as well. I couldn't help but feel somewhat hopeful that they'd be able to help us out. Even though I knew that the chances of them even finding anything wasn't high. But hope is an amazing thing.

We hadn't heard from Genetics yet, at the time of this appointment, but I admitted that it must mean that there was nothing to mention. We aren't upset about that. There's no need to bring us in on nothing, plus it saves us an hour drive in to BCCH, paying for parking, finding childcare, and the drive back home. We can appreciate that.  The Specialist at TIDE BC had most of our test results in her file and she confirmed that they were were 'negative' or 'normal'. (no surprise)

Our appointment was short. I was advised by a friend who'd been to TIDE already, as well as the printed handout the clinical nurse gave me, that we'd have questions to answer (mostly background info---stuff we answer at every doctor's appointment, which is frustrating.), they'd do a check on Rhys and we'd be send for a bunch of lab work. (yay) However, it didn't end up that way. Instead, the doctor recognized that we had done so many genetic tests already and that there wasn't much else for them to do. Instead, after a brief look over Rhys, she asked if she could refer us to another group. They are called CAUSES, another clinic based out of BCCH.

This group is still in it's testing phase, but showing lost of promise and answers. They work with Genetics as well, but the biggest and best part of them is that instead of doing multiple tests (which we already have done a boatload), they do only one. Yep. One giant DNA test. Bam! That's it! So no more going back and doing "one more test" and no doctor saying, 'maybe we can look for this..." How awesome is that? It's a huge test and answers our feelings towards wasting anyone's time and/or putting Rhys through more poking and trauma (he already is a huge handful to get labwork done as it is)

I found this about CAUSES on the Genome British Columbia site:

About the CAUSES Clinic
The CAUSES Clinic will provide advanced DNA testing, clinical interpretation, genetic counselling, and personalized recommendations for treatment for children with complex, undiagnosed medical
conditions. There are more than 7,000 known genetic disorders, and the CAUSES Clinic will test for all of these using one genomic test. If advanced DNA testing identifies a child with a treatable condition, then treatment can be started earlier. For some children, this will be life-changing. Obtaining the right treatment earlier will help prevent medical complications and save lives. The CAUSES Clinic is made possible by a $3-million commitment from Mining for Miracles through BC Children’s Hospital Foundation and is supported by the Provincial Health Services Authority and the University of British Columbia. The CAUSES Clinic will ensure that BC Children’s Hospital remains a centre of excellence providing outstanding care to the children and families of British Columbia.

The CAUSES Clinic will:

• Test at least 500 children and family members within the next three years to identify illnesses that would previously have gone undiagnosed;
• Provide genetic counselling, interpretation of complex testing results, and personalized treatment recommendations for children who receive a diagnosis from the Clinic’s advanced DNA testing;

• Help reduce the number of invasive tests – such as biopsies, biochemical tests, expensive single gene tests, or MRI scans often requiring sedation– needed to obtain a diagnosis for children. This is expected to reduce the average number of tests per child required for a diagnosis from 10 or more to one, resulting in significant savings for both families and the health-care system;

• Help prevent medical complications. In cases where advanced DNA testing identifies a treatable condition in a child, then treatment can be started immediately. Obtaining the right treatment earlier will help prevent medical complications and save lives;

• Partner with BC Children’s Hospital BioBank to store biological samples donated by patients, which will contribute to significant research discoveries.

The doctor told us that this testing has a 30% rate of discovery.  Which is encouraging to hear. That's a lot of families who have gotten answers. But that does mean that 70% of patients don't have anything in the end. She needed us to understand that the results may not yield anything. But I said that even a "normal" is an answer. Isn't it? Having no genetic problems is actually an important piece of our search to know. It'll be definitive, at least.

CAUSES has a fast response time too. Apparently they take only about 2-3 weeks to decide (as a group with all the Specialists) if you are a good candidate for their program. So maybe we'll hear soon if this is something we'll be searching further. If the decide to look into Rhys' case, apparently they'll contact our Specialist at TIDE, who will then contact the Genetics Counsellor, who will then contact us to set up an appointment date. It's all so run-around-ish, but I was told it also happens sooner than typical.

The funny thing is that a few days after our appointment at TIDE BC, we got a call from the Genetics department. The doctor didn't find anything in his tests, but he'd like to recommend us to a different group for further testing!  When I talked to the Doctor's Assistant (I'm not actually too sure who she was, to be honest), I told her about TIDE and CAUSES and she said that was the group that our doctor wanted to send us to! How interesting!  I asked what the criteria was for this---what about Rhys was it that made him want to go further? She said that the doctor feels that even though the tests are coming back normal or fine that there may be something else going on with him. So it wasn't necessarily that Rhys was a "special case", but that he's worth looking further into. That was actually good for me to hear. (It's not all in my head!)  There's something there, but what? We're short of answers, but maybe there are still options.

What we've been waiting over a year for: R's Assessment

It has been almost two months since we had Rhys assessed at Sunnyhill. Or rather, it was done at the Fraser Developmental Clinic in New Wesminster. When we were sent there I was unclear if FDC was a part of Sunnyhill or contracted out and if we went there due to a shorter drive distance or due to S being so busy. But whatever the reason, I was very pleased with our experience. The Fraser Developmental Clinic has a very professional and caring staff of specialists (plus a friendly and fun receptionist). We were there for 8 sessions over a 5 day period. Most were interviews with Hunny and myself, some were just with Rhys, which was hard at first. To not be in the room with him, that is. Other than school (or a birthday party or Sunday school), I have always been with him, being his voice and advocate. And here, he had to see a few doctors without me in the room. It took me a bit to get used to. Handing your child off to people you don't know, whether they are professionals or not, takes a lot of trust.

At the end of our sessions, we met with all of the Specialists for a conference to discuss the results. (minus Rhys) We met with the Developmental Pediatrician, Psychologist, Speech-Language Pathologist, Clinical Social Worker, Occupational Therapist, and a Case Manager. I was so nervous! What if they said nothing was wrong? What if they mentioned something that I hadn't thought of or mentally prepared myself for? Would I cry? (I thought I would, so I brought tissues in my pocket, just in case!)

The conference was, to be honest, quite anti-climatic. They didn't say anything that we didn't know or observe on our own. But they give us a few names.
-Verbal Learning Disability
-Written Output Learning Disability
-Math Learning Disability
-Reading Learning Disability
-Communication Disorder (more info on that HERE)

That's a lot of Disabilities and Disorders. Which is sad.

 First off, they started by reminding us of what a sweet boy he is (we know!) and how friendly and caring he is, and what a fun gentle spirit he has. (we agree!) The Psychologist talked the most, but she, and the Speech Pathologist and Occupational Therapist gave the most info. But really they were all so helpful. The diagnosis they were able to give us were "verbal learning disability" (he has never been good with verbal and has a poor memory, and learns better visually) and "communication/language disorder." So no surprise there. They did not say that we needed to get him therapy somewhere (although, if it worked for our family, they'd suggest ST) but they were going to "Strongly Recommend school support" to our principal. That was an answer I was really looking for! I don't know what exactly that will mean, or what the school can/will provide for us, but I am hopeful.


They mentioned how this is a life-long disability, and how he'll have a hard time in school due to it (academically speaking he'll struggle with concepts, especially since most are verbal, like math and reading) but he has other gifts (he is good with fine motor and loves to draw) and they gave us some tips. His "executive functioning" was below average. That made me sad.

 The Developmental Pediatrician said that we will probably never know why he is the way he is, but it looks like we have had every test or procedure done and we have done a good job. The Social Worker (who turned out to be not as helpful as we were hoping or expecting) said that it is probably something passed down in our families (we both had fathers with speech delayment as young boys); she may be correct. They did rule out it being from the True Knot in his cord discovered after his birth, since he doesn't have severe developmental issues. (it was good to put that at rest in my mind) But despite those comments, we have not cancelled our appointments with Genetics!

These titles should be able to get him the help in school that he needs. This means that we'll get to join the many who have an IEP for their child --something that I hadn't thought of before. I'm not too sure when that'll happen or what it really means, but I am apprehensive as I've heard so many discouraging stories of parents being in tears or frustrated at the IEP meetings since their child's needs aren't really being met. I'm nervous about that. But I'm trying not to think too far ahead.

Another title mentioned was Complex Developmental Behavioral Condition (CDBC), which is baffling me. There is very little information about it online. A lot of clinical pages, or ones on getting referred to have it diagnosed, but I'd like personal stuff, like blogs and pages on people it really effects. (which is one of the main reasons why I blog about Rhys'  issues... I know that he isn't the only one out there, and maybe someone else will read this and find comfort and support. Hang in there, Stranger! *fist bump*)  The other confusing part is how it was presented to us. They mentioned it briefly during the conference, so I was hoping more would be said in the full report. Instead it was added as an extra, saying that the school "may wish to identify R as having CDBC according to the Ministry of Education.....and recommend additional support in the classroom under this diagnosis."

What does that mean???

I'm not too sure what to do with this information. Does he have CDBC or not? Is it a diagnosis or isn't it? Don't the Specialists need to diagnose it not the school? Maybe it will help the school in receiving funding for his care and support, but what does it mean for Rhys? Isn't this name a bit more important than all of his learning disabilities? After all, that is an actual name...something that makes sense. It sounds impressive. It says something's going on. It has a label that I can explain to others.  Yet it also doesn't explain much at all.

After waiting for a good two years for this assessment, I'm finding it not as bomb-shell-useful as I'd hoped. I wanted answers, ...and I got some. But I also got more questions! This isn't really the end, but more of a beginning.

I think I'm going to have to meet with our own pediatrician for more answers. But for now this is a start. A partial diagnosis.  I'm happy that along with the really long full report, the specialists at least gave some recommendations for us, which appear to be very helpful. (They also included an extra report for us to give to the school.)


I remember being told by many friends that doing an assessment or having a label or diagnosis won't change Rhys. They seemed to say it to deter us from searching for something that may not matter. And they were right.

These names don't change him. But they help him. And that's a good thing.

you matter

step one, check!

I got the phone call I was hoping for yesterday!

 I have been trying for almost two years now to have Rhys assessed at Sunny Hill, which is a program for children with developmental delays and/or on the autism spectrum. He just turned 7, but still is at a 4 yr old level in a lot of things and we have been trying to find some answers for a while now. Well, they finally called! 

I talked to a woman who was working on our file and she was really nice and helpful. She asked me a bunch of questions on my concerns, plus the typical "how does he do with this...?" type of ones. She is going to set us up with a developmental pediatrician, a physiotherapist, a psychologist (or psychiatrist, I can't recall), a speech therapist and a social worker! (The social worker is what is the scary word.  It's the fears of what the name means, right? In the news, it is a Social worker that takes kids away from families! But I was told that she was there to advocate for him and to show us how to...more like a case worker!) 

Yay! I'm not too sure when these appointments will be made, but I'm hoping soon! Having specialists assess him could mean an eventual diagnosis, or at least something to help him from falling farther behind. He needs help in school, but not 100% of the time, so it's difficult! 

The other news is that we got a letter in the mail letting us know of an appointment for assessment at the Biochemical Diseases Clinic at BCCH.  That was out of nowhere! I hadn't heard of this place, until it was pointed out to me that it was TIDE BC, the clinic we were hoping to get him into!! They work alongside the genetics department in efforts to "prevent and treat intellectual disability", using diet or medication. (I prefer the term "delayment" as it doesn't sound so scary to me as ID!) I'm excited about this appointment, even though it's not til October. 

It's the start of something good.  The start of some important steps!  It's hard not to feel hopeful, so for now I am going to be thankful and celebrate!

someone slap a label on that kid!

It's funny how you spend so much effort as a teenager making sure no one labels you (unless if you were in the 'Popular' crowd, then maybe you liked that label) When you head into parenthood, you try to do everything right for your child so that no labels stick on them either. Labels are a bad thing, after all. They often identify you to a group, and most of the time, we want to blend in, and not stand out as being associated in a crowd.

I spent my teens hot headed (shall I say a bit Fiery?) and stubborn; disassociating from certain groups. I wasn't Popular or Athletic, nor was I a Skater. I wore the label Weird with pride, sometimes with indifference. I wasn't loud, but I was confident. I had enthusiasm and hyperactivity, yet was quiet enough to be a compassionate friend and listener. I didn't fit the stereotypical teenager seen in movies or on tv, or in books or on the news. And I was proud of that. Although I sometimes felt the need to fit in somewhere; a desire to be a part of a recognized group.  (As an adult, I now see that my small knit friends was the perfect group all on its own; we didn't fit the typical labels.  I see how there were more of Us in that average-but-awesome group than Them with the groups!)

We always seem to fight labels as if they are a negative thing, but I'm entering into a new territory that makes me question the aversion.  Especially with World Autism Awareness Day last month (April 2) and our own searches for an answer to Rhys' delayment.  Autism is one of the most recognized disorder out there right now and effects 1 in 68 children, according to online searches. (I came across a magazine article written in 2011 that said the stats were 1 in 100 children. Wow. Quite the change in 3 years!) It is not contained to a certain geographic region or race and effects so many lives that the UN has declared a National day of recognition for it.

I think it's great that there is so much going into support to help families deal with the complex issues they face with Autism. And it's great to see walks and fundraisers for more research so that the help is there.  But it is on a day like that day that it makes me wish Rhys was Austistic.

Now, dont get me wrong. I do not wish any type of disease or imparement or illness or stigma on any of my children. But I do wish I had an answer for him. And autism would be an "easy" one.  It would mean knowing how to deal. It would mean having a plan. It would mean getting the support he needs. It would be a start to the next phase of life, but at least that phase has a huge community of doctors, supporters, therapists, and even celebrities all who understand and deal with the same things you deal with. And that label gets you in the door.

I have looked into the  Austism Spectrum but Rhys just doesn't fit that many criteria; and I keep looking every few months. I do those at-home tests online, but it doesn't all add up. And I've had his preschood teacher and his doctor and pediatrician all say that he doesn't fit the label. Which is a good thing. But also a frustrating thing.

Currently, he is a label-less boy who is falling through the cracks.

As I wait for something to pop up for him, I find my other son seeking a label as well.  I was talking to my friend about the teacher thinking that Kai may have ADHD, and my surprise at him fitting some of the symptoms. She looked concerned and replied with a shake of her head, "Oh, you don't want to put him on medication!"

I understood her thinking. It can seem that doctors and teachers want to medicate and subdue our children. Especially our boys. And it's not something that I want to do either, but after talking with the school SEA Co-ordinator, and seeing how Kai is at home, I can't help but feel that I'd accept medicating him if it will help!

If slapping a label on him gets him the help he needs, then I'm all for it! Please, give us a name! I am learning that without a name, schools can't seem to do anything, and doctor's don't know what to do. We need that label to move forward.  I'll take an "easy" and friendly, well-known one (like Austism and ADHD). I'll even go for a complex one that is misunderstood. I just want something.

And to think that one day I would be desiring a label for my child! We don't want to let a name hold him back, but use it as a way to understand and learn. And to move forward. 

It helps get you through the door.

Confirmation

We finally got our confirmation letter that Rhys will be seen by the Complex Developmental and Behavioural Conditions Program (CDBC) at Sunnyhill!

I may have cried a bit when I read the letter!

We don't have a date yet and I don't know how long the wait is, since I have to mail in our consent forms first (so that they may inquire with anyone else who has worked with Rhys in the past).  I also have to track down any forms from recent doctor and specialist tests and visits to send along. But this is a start!

Falling Through the Cracks

We fired our paediatrician this year. Her ruining our referral for an assessment at Sunnyhill did it for us.  When we approached our initial appointment with the new paediatrician last month, I tried to gather up all the necessary information so he could be caught up on Rhys. I didn't want to have to go through tons of paperwork or do unnecessary testing that would put us back by several months. I already feel we are behind! So I got my Rhys Binder together and went through my last notes to see what would be the most important to mention. I never know if I will have to spend the time trying to convince the doctor of our need for further assessment or if our words will be enough.

Prior to the appointment, I asked Rhys' teacher and the SEA in the classroom if they could put together a letter for us to give to the pediatrician. It was handed to me on the last day of classes before Spring Break and put together with help from the Special Education Coordinator.  It was an interesting letter. Most of it I already knew about, but some threw me off, and some parts made me actually laugh out loud.

It mentioned how he "presents physically, socially, and academically as being younger than his kindergarten peers", specifically pointing out that he can do and say things that "are innapropriate or that his peers find odd." (he does not understand personal space, and likes to dance and hit his bottom---that makes me laugh, but it's uncomfortable to people.)  His speech is still very unclear and he is learning at a slower pace than his classmates.

There was a noted incident where the class did a skipping activity and he couldn't do it and he fell. The ability to skip is a skill that he has only gained last year in preschool, so he has not mastered it yet; he is still working on his balance.  It was pointed out that his reaction time to break his fall is slow, so when he stumbles, the fall can be quite hard. I hadn't thought of that before, but it makes sense.  It explains all of the times he's cried and cried over a "simple" fall--it may not have been so simple for him.

What made me laugh was when his preschool teacher described him as "oddly optimistic". What does that mean? I guess he can be a bit more enthusiastic than necessary.

What frustrated me was the I have two pages of how Rhys is different than his peers and is struggling, yet no teacher or SEA has talked to me directly about it. I have tried to open up a dialog with them though, but things haven't gone far. Yet I read: "the challenges in these areas are directly effecting his progress academically and his ability to interact socially with peers in a meaningful way." So why are they not meeting with me about it?  Why have they not brought up ideas or suggestions?  Why have they not done their own assessment?


Just before Christmas break, his teacher mentioned about him "falling through the cracks." How true that is.  He is behind in many areas, but he doesn't need an aide in the classroom all of the time, yet he does need more one-on-one attention.  I can see how he misses out when they don't know where he fits.


When we met with the new pediatrician, he used those same words.  That it seemed that Rhys was "falling through the cracks."  He is gaining skills, but behind in many, but not so far behind that he obviously needs help. It's hard for me. I hate to think that instead of Rhys getting the help he needs, he may be seen as disruptive or a troublemaker by the teachers when he gets older.

Our new pediatrician is going to talk to Sunnyhill and see about us getting an assesment done, but he wasn't too sure if there was a cut-off age. I didn't see one online, so I hope there isn't.  It would seem so unfair if they didn't accept his case, since we were on that wait list at age five and still in preschool, and it was the old pediatrician's fault we weren't anymore.  It also would seem strange to have an age limit since some of these delayments come out more in the first years of school.  Hopefully we will hear something soon.

He also mentioned a group called TIDE BC. They are out of BCCH and work along with Genetics. The goal is to see if therapy would help offset some delayments in children, decrease that gap, and maybe increase some skills. A lot of it went over my head during our appointment, but when I looked them up online, I felt some hope and excitement. Wouldn't it be wonderful if this team of researchers and specialists were able to find some sort of treatment that would help Rhys?  We haven't heard from Genetics yet though, regarding any test results, so I don't know if they even found anything or were even able to get anything from the bloodtests. (I can only assume that silence means that there is nothing to discuss.) The doctor wasn't even sure if we would be a good candidate for TIDE BC, but hopefully someone will find our case interesting enough to work on!

It's hard when you have teachers and doctors telling you that your child is falling through the cracks and getting further behind but they can't seem to do anything about it.  It's frustrating and disheartening. But I am trying to be hopeful that we will get somewhere with this new pediatrician. I know that there are options out there, at least.

Incident on the playground

When I picked up Rhys from kindergarten today, his teacher told me there was an "incident on the playground" which left him with a scratched face. I didn't think much of it; he must've fallen. He trips easily. But after half an hour I thought it looked suspiciously like scratches from a hand. 

Sure enough, when I asked him, he said one of his classmates did it. But he couldn't really remember a lot of the incident (part of his delayment issues come from lack of memory and ability to explain or speak properly), so I don't know what happened. Something about the girl being tagged or not being tagged while they were playing on the playground. (it was just the two of them, plus another boy, during free play. The rest of the class was inside the room, which is steps from the playground. So no adult witnessed this either.)


Sadly, this girl has been rough with him a few times.  I'm not too sure what to do about it. I want to mention it to the girl's parents, but I also don't want to come out as if Rhys was completely innocent in it either, since I don't know if he was.  Did he say something to her? Was he being mean? Did he shove her or retaliate? Not that that excuses her scratching in any way, but it does make it less of a 'your girl is beating up my boy' and more of a 'our children don't get along' thing.  I've never had to deal with this in the other kids.  

It makes me sad because he is a sweetheart. It also makes me frustrated that it is shrugged off by the teacher.  He already talks about how one girl (a different one than this one) is mean to him and always shoving him!  And I don't understand why.  Is he doing something? What causes them to shove him? (the two girls seem to like to do this) My poor boy, who can't explain himself very well.

Year of Specialists

I am fast beginning to realize that this is the year of appointments.

This week we have a Breathing Test for Abi. That should be interesting. I'm curious as to what will show up and what the specialist will suggest or say about her lung function.

We have her ENT appt booked for May. Yay! She has struggled a lot this winter with her tonsils and asthma and so I am happy to have this addressed. Especially when every doctor we saw (her own, plus two at the medical clinic) mentioned how Huge her tonsils were, so much so that our own doctor said that they were "almost kissing"! That can't be right!

We are finally seeing a new pediatrician for Rhys! I am so excited about that! We have actually seen this doctor before, when Bryn was a baby and struggling with reflux. This doctor also, incidentally, was the one on call when I brought Rhys into the ER at one month old and very very sick, and he's the one who did all sorts of tests on him (including spinal tap) to determine why he was having apnea spells. That was a scary visit! But this upcoming visit next month will be better! I'm looking forward to seeing a new doctor and hopefully getting something sorted out for Rhys. I hate having this Mommy Gut tell me something isn't "right" with my boy, but also having him "well enough" that I need to explain and justify myself.

For Kai, we got confirmation for his annual cardiology appointments in August, which is nice. I hate having to call BCCH to get our appointments booked. It is such a hassel and the receptionist never calls you back!  The doctor also has his 24-Hr Holter Monitor booked, as well as an exercise test, which shall be interesting.

Of course, we also have our usual dental visits (I'm not looking forward to an upcoming one) and an annual eye appointment next month as well. But those are normal.  Hopefully our "un normal" ones will give us good answers though. And for that I have hope and slight anticipation!

a new angle

A few weeks ago, my husband and I were called in for an appoitment with Kai's teacher. That's never a good feeling! She has been really concerned with his school work and behaviour, saying that he has missed a lot of school and isn't completing work. We had talked to her about this in the Fall, but we thought things had gotten better.  She is worried that his schoolwork is failing due to health issues as he's falling asleep in class and is basically a zombie and not seeming to take in any information.  

We have troubles with him at home with getting to bed on time, generally listening to us at all really, with doing any time of chore or task. He also has NEVER been bothered with consequences, which makes things difficult. He'll throw a temper tantrum at first (and, yes, he is 11yrs old), but be stubborn enough that he won't be bothered by it later. We have been struggling with finding a way to deal with him, but everything seems to turn into a fight. It's been rough.

Other than the usual stuff that we already knew about...his teacher mentioned something that completely surprised me. She wondered if he has ADHD! The funny thing is that my husband agreed it was a possiblity. I'm not saying that it is NOT possible...I was just so surprised as it had never crossed my mind before! However, I looked online and found the list of symptoms on the Mayo Clinic site and was surprised at how much of a possibility it is!

 Attention-deficit/hyperactivity disorder (ADHD) has been called attention-deficit disorder (ADD) in the past. But ADHD is now the preferred term because it describes both of the primary features of this condition: inattention and hyperactive-impulsive behavior.
Signs and symptoms of ADHD may include:

• Difficulty paying attention
• Frequently daydreaming
• Difficulty following through on instructions and apparently not listening
• Frequently has problems organizing tasks or activities
• Frequently forgetful and loses needed items, such as books, pencils or toys
• Frequently fails to finish schoolwork, chores or other tasks
• Easily distracted
• Frequently fidgets or squirms
• Difficulty remaining seated and seemly in constant motion
• Excessively talkative
• Frequently interrupts or intrudes on others' conversations or games
• Frequently has trouble waiting for his or her turn

( see here for more information:  )

In our meeting, the teacher had also included the school Special Needs Coordinator, who deals with ADHD students. We had never met her before, or even knew her name, and she hadn't met with Kai before this meeting either, but the teacher thought it would be good to bring her in just for an assessment.  We were fine with that because this problem was starting to become something bigger than we had thought it would be. While we didn't know he was having this much trouble in class (his teacher said that one week he was such a "zombie" that she didn't even know if he even learned or listened to a thing that whole five days, and thought it may have been a write off in terms of usefulness. Wow. Harsh. Bigger that we thought.)  we did know that he was becoming more difficult at home. So many late nights, so much frustration and anger and temper tantrums, and so much arguing and causing fights. He made car rides so stressful! And we were at our wits end with what to do for him, but knowing something had to change!

At the end of our appointment, the SN gave us a questionaire to fill out. One for us and one for his teacher. And, just like in filling out one for Rhys and his special needs, I found it hard. You have to sit there and focus on all the possible negative qualities your child has, and it is tough on a mommy heart. Some of the questions were surprising, such as "has your child ever stolen when confronting others (ie mugging, purse snatching, armed robbery)?" or "Has your child ever assaulted anyone sexually?" Those made me nervous and I was wondering, 'are you sure this is a school questionnaire and not something the police needs to know of?' eep!  You had to give your answers in numbers (0: not true/never all the way to 3: very true/frequently) A lot of them weren't too hard to answer, but a few had me not quite seeing it as my husband did, so we had to discuss them. The easy ones were "does your child blurt out answers before the question is completed?" or "annoys others on purpose" or "is the last to be picked for teams and games." or "is a poor speller" (that seemed strange to me, as if spelling had anything to do with behavioural issues) or "become irritable when anxious?"  (We haven't noticed any anxiety)  

The hardest for me were the last three questions:  does your child's problem seriously effect school work and grades? friendships? home life?

The questionairre also gave a place for us to write down what we thought were his strengths, but after focusing on negative things, it's hard to get into that mind set.  My husband said that he has "good mechanical aptitude". I laughed. That sounds so clinical. Who even knows what that means? I mean, other than my mechanically minded hudband!  We added it anyways.

So now we wait. I'm not too sure what will happen next, but I guess we will hear from the SN Coordinator and maybe do further testing.

Until then, we are trying what we can at home. We are being more strict in his bedtime and are giving him Melatonin to help him sleep.  I have never been one to believe in giving medications on a long term basis (other than ones that are medically needed, such as my thyroid pills and the ones Kai takes for his cardiomyopathy, of course) but we thought this was needed. Especially since it seemed no matter what time we send him to bed at, he was still staying up late and struggling to fall asleep and struggling during the day time. Sleep was one of the concerns his teacher brought up, so we knew we had to address it. 

We were amazed at how it changed him almost immediately! He was suddenly a happier boy! He wasn't fighting much with his siblings anymore and he was helping out in the family and it was just a shock!  I greeted him with a "hello" one morning and he responded "good morning!" cheerfully!  I blinked and wondered who this boy was!  Sometimes change is good!

Even his teacher has noticed! When she asked him about it, he said that his parents were making him take melatonin, and so she asked what he thought about it, to which he replied that it "felt like his brain was awake now"! Wow. What does that say?

I'm not too sure what will happen next, but I guess we are starting a new journey with him. One that has been needed to be addressed for a few years now. I'm apprehensive and nervous, but also hopeful. Maybe this could be the answer to our worries!

Family Field Trip

I let my kids skip school earlier this week!  It was actually their Father's idea! I know, how unusual for him, but he thought it would be something fun to do. Our annual membership to the Vancouver Aquarium was coming to an end and so why not take one last trip downtown? He took the day off of work and we planned to surprise the kids in the morning.

Our first plan of action was to not set our alarms, but to sleep in. Of course, this is my husband, who doesn't know how to sleep in, but that just meant that we could plan it more accurately. He got out of the shower and woke me up and then rushed into the room, yelling at the kids that we were late, we slept in, let's get moving, we have no time for breakfast, let's go!  I was surprised at how calmly the kids were, and how much they didn't grumble!

Our ruse was to say that we had to head into Surrey to drop off Hunny at the skytrain station. That was just so they didn't question why we were going the opposite direction of their school. But then, we stopped at the SMH Outpatient building so that we could FINALLY get Rhys' bloodwork done. (Remember our Genetics apt and the tests that he wanted to do way back in the summer? It has taken us this long to do it. First, the phlebotomist' couldn't figure out what one test was and was waiting to hear back from the doctor. Then we had to fast for one of them. Then Rhys didn't do well and had his vein collapse during one test. And then we just plain forgot over time. *blush* But we have finally done it. And hopefully it is all good and we will get answers next month!) I went in with him while Hunny took the kids for a quick breakfast, grabbing us something as well (Rhys had to fast for one of them, so we just made everyone wait on breakfast to make it easier!)  It was after we got picked up from the Centre that we told the kids the news!  They actually responded not as excitedly as we were hoping! Instead, they talked about how they already guessed something was up! haha. We have astute children!  Having their Father and I so calm about being "late" probably threw them off. They also guessed since I "forgot" to make them all lunches for school and suddenly Hunny had some course to go to for the day that they hadn't heard of!

It was a fun morning trying to be sneaky!

 The Rainforest section. I like this part. It's so humid inside though, but I like being warm, and I like how you see other animals other than just aquatic ones. There are Marmosets, tree frogs, ducks, sloths, parrots and these macaws to name a few.  I obviously have toddlers because I was thinking of all the Baby Marmosets and Blue Macaws that Dora and Diego have rescued or helped out or seen in their Nick Jr. shows!

Jellies!  They fascinate me! I love the jellyfish section. I didn't realize there were so many different varieties!

Rhys found a different type of "fish" in this tank!  By coming early in the morning, and on a school day, we got to watch some tanks be cleaned. We also weren't trying to keep track of kids or find spots to see through crowds. It was nice!

I love the Tropical section where you can see some sharks and the sea turtle! Thanks to the movie Little Nemo, now every time I see the sea turtle, I have to say "Duuuude!"  (the kids don't get it!)  This tank is huge and very busy!

Little Nemos!!! The Clownfish were Eden's favourite.

We had a great day at the Aquarium. Since it wasn't busy (two or three classes arrived by lunchtime, or at least we were all in the same place at that time) we got to watch the Beluga show and the Dolphin show. We had never been able to see those before due to crowds, so it was so neat! I had no idea that dolphins could swim so fast!  I love seeing all of the tricks that the dolphins and belugas had learned to do. I'm not a big "fish" person, but it must be amazing to work with these animals!

It was worth it to skip school!

Incomplete Referral

I received a letter from  Sunny Hill Development Centre this week. For a moment I actually thought that maybe, just maybe, our pediatrician sent in a referral form again without seeing us...sort of like a Christmas Miracle...and we were getting confirmation.  But, yeah, that wasn't it. It was another notice to let us know that the Referral was Incomplete and they aren't able to do anything for us until they receive these papers. This was the second request they have sent, the first one being in November 2013. *sigh*  I remember receiving the first one, in January of this year, and thinking that I'd be able to let the doctor do her part on her own, only to talk to the Centre in July and learned that they Closed our file before it could even really be opened. It was so disappointing.

Ever since then, we've been given the run-around by everyone. Our own family doctor is trying to help us out where she can, by talking to Sunny Hill and by sending off a letter professionally suggesting that the doctor should help us out and get those files sent, but she can only do so much. Unfortuately, those forms need to be filled out by a specialist.

We did have the pediatrician's office call me last month letting me know that it wasn't their fault that the forms weren't filled out correctly, but the locum doctor who was on while our ped was on maternity leave. She filled them out in August of 2013. However, the first notice from Sunny Hill was sent in November, when our pediatrician was back at work full time, making it her fault for not following up.

We were told, however, that she would fill the forms out again and send them off for us, but we had to get a referral from our family doctor to see her first and she'd do have to do another check up on Rhys, since it has been a year since we've been there. 

I told my doctor, who supposedly sent off that referral, but we haven't heard anything back yet.

After this letter, I am feeling so done with this pediatrician.  We haven't liked her since the beginning when she was caring for Kai in 2004-05, but I stuck with her because it was easier than finding a new doctor and having to go through the whole process all over again.  But I have decided to get over those feelings of misplaced loyalty. When I saw our family doctor this week and showed her the letter, I requested a new pediatrician. I will ask at Dr Tandan's office for our files. Hopefully 2015 will get us somewhere.  All we want is an assessment done on Rhys!

He is doing so well in Kindergarten and does fit in well there; in fact he is blossoming! He is full of excitement and energy and loves to go!  I don't have any doubts with him being there at all!  

At our parent-teacher interview in November, the teacher talked of how he loves school, and is helpful and offers to help out a lot (we see that at home too). He loves to give hugs, but he is learning to do high-fives more (remember our Speech Therapist saying he needed to work on that? it was sad, but it's gotten better!), although he has no concept of personal space! haha. Don't we know it! Her report was written very positive, but she mentioned how he "can be silly" and sometimes he goes off task at carpet time, so he's a bit delayed in that way. As well as in Speech. I'm not too sure what they will do about that yet. We haven't heard from the Education Assistant yet, but I will be meeting with her in the new year. He is starting to remember names and letters too, but not nearly as many as he should be. But I am so happy with how much he has gained already since starting school full time!

Sometimes I want to pretend all is fine and normal with him, but there are signs that make him "different", and I don't know how to help him. He isn't doing "too bad". But these things need to be addressed before he gets too old and they can't be.

a solution?

I came across a shock tonight.  Not only did Rhys ask for some toenail clippers, but he sat on a chair and trimmed those nails for a good 20 minutes!  The boy who flips out, shrieks and squirms if anyone touches his feet (or even suggests it and looks at them) was actually sitting still and working so carefully!  I was impressed! And he asked to do this on his own!

Maybe this will stop the stress and anxiety of having to trim those for him. He hates to do it and they get so long that they start to scratch others and poke back into his own feet! 

It's a surprising start! He is growing!

Assessment Reports and updates

We finally received the report from the Centre for Child Development's Communication Therapy that Rhys had earlier this year. We only saw Rina for a few months, just enough time to get the testing done and work on a few things. It almost seemed useless to me, since we didn't get to work on anything long enough, but having this report done is a good start, and I was able to pass along a copy to the school.

The report shouldn't have been a surprise, but it still hits me hard when I see it in print at how my child is behind, or not deemed "typical" or "normal".

The summery states that his receptive language (understanding) is "low average", and he has "mild delay" for expressive language, and "moderately delayed" for speech sounds. However, his non-verbal communication is age appropriate, and has appropriate eye contact, and plays well with a good imagination. His CT noted that he is a visual learner and benefits with a lot of warnings leading up to transitions, since he struggles with changes. (such as a game ending or having to leave somewhere.)

The break-down of his scores was sad to see. The average Standard Score is between 85-115 and he was evaluated with 3 out of 4 under that.  The Scaled Score average is 7-13 and he scored 3 out of 7, with 1 being borderline, below that.  The average Percentile is 16th-85th and his results show that 6 out of 11 fall below. This was for the Clinical Evaluation of Language Fundamentals, such as sentence structure, expressive vocabulary, concepts and following directions, word classes-receptive and expressive, core language and language content.

The good news is this: he is very social and has a great imagination and does love to talk. And I remind myself that he is doing so well in school! He is loving kindergarten! When I see all of the steps he has taken, and how much he has grown in just a year, I can't help but feel excited and relieved. So far his delays haven't kept him from anything in school, and that makes me happy.

*****
We also received an assessment from the Genetics Dept from our appointment in August. It was a detailed report explaining the physical examination (he is in the 15th percentile for height and head circumference, and 3rd to 15th for weight), and it sounds that everything is normal and healthy, thankfully. It also listed his prior investigations as being normal or unremarkable (head CT scan, chromosome analysis, urine).  The big news we were waiting for was written at the end as the doctor's impressions: "Rhys is a young man with developmental problems and dysmorphic features that are not pathognomonic of a genetic syndrome known to me."  Which is what we were expecting. That there wasn't anything obvious. We are still waiting for the results of his blood tests.

****
I have talked to my doctor a few times regarding our referral to Sunny Hill, which wasn't completed and therefore our file was closed before it could even be opened. It was the doctor who sent in the referral, but it was the pediatrician that was supposed to give me forms to fill out (she didn't). Apparently, the referral department at Sunny Hill tried to contact the pediatrician several times to get the information needed, but she never returned their calls. *sigh*  I am so frustrated with her!  My doctor is going to see if sending her a letter on our behalf will help get the pediatrician working for us, but I don't know.  I would love to avoid seeing her altogether, but maybe I have to just be strong and go in and get that referral done!

So that is what we are at. Now you know too.

closed before it was even open

I did a bit of calling around at Sunny Hill Centre to find out about our wait for an assessment.  We were referred some time in the fall and hadn't heard from them aside from a letter in January saying they needed some more paperwork from the doctor, so it was time to find out how things were going. I am so frustrated and disappointed to say that I found out that they closed our file at Sunny Hill before it could even be opened!!! They said that they didn't receive the info they needed from the doctor!

Sunny Hill Centre is a child rehabilitation and development program out of BCCH that we are hoping to have Rhys assessed at. The wait list is longer than a year...and now I have to wait til we get re-referred.

Out of automatic reflex, and our own experience with her, we assumed it was from our pediatrician that it was forgotten. So I called up her office ready to say some words (I ended up being polite, but strained enough to get the displeasure across) and her secretary (is that what they are still called today?) opened up R's file and informed me that they didn't send in the referral! What? oops. Oh yeah. I remember now how it was our family doctor who did it for us in the end, because I wasn't too sure if our pediatrician was going to ever do it or not. So that meant I had to call the family doctor's office. (I admit to being a bit more patient with that phone call. I have known the secretary there for many years and am fond of her) Teresa was surprised to think that they didn't send something out (as was I) and said they would've been reminded to do that. I had to tell her that a letter did go out in January requesting more information; we received the letter, as well as the pediatrician. (I remember wondering then if I needed to call Dr T to remind her to send off the paperwork, but decided that the ped should know how to do that. So even then I was confused at who was in charge with it)  So I was left with the message that they'd look into it. 

I am so disappointed that we are back at the beginning again, and we'll be put at the bottom of the wait list, even though we have been waiting for about 10 months already. I have had a few friends who have suggested that maybe our doctor could try to "pull some strings" and get him in sooner, but I don't know about that. That wouldn't be fair for other children who have been waiting. And I am reminded that while R is more of an almost-five year old than a six year old, and that he has always been a year + behind in growth, that he isn't doing too bad. He fits in well with the kids entering kindergarten, and he hasn't needed help in class in preschool. So I struggle with thinking he needs to pushed ahead of the wait list. An apology from Dr C would be nice though, a sheepish 'oops'. Maybe I'm too forgiving? But I guess there really isn't anything I can do about this mistake, except wait. Again.

Genetics

We made it to Rhys' Genetics appointment. Yep, our time has finally come!  I was so happy that Hunny took an extra day off of work to attend as well, since I was a bundle of nerves. (even though I knew I didn't have to be) And I am grateful for two sisters who stepped in to watch the kids for us so we didn't need to drag them along to the Specialist as well. (that would've upped my stress level. Having the pressure to keep kids still and quiet at appointments is a tough one.)  We weren't too sure how long everything would take, but we had to predict that it would be, at the very least, a three hour day. One hour to drive in to BC Children's Hospital, one hour for the appointment and then one hour to drive home. Of course, there was the thought of the appointment not being on time (our cardiology appointments never are at BCCH!) and then time spent at the Lab if we have tests to do, and then would we hit rush hour traffic? Somehow, your whole day is spent just for one simple appointment!

We weren't too sure what to expect, so I brought along my "Rhys Binder". It contains paperwork from his visits with Infant Development Program (now called Sources), as well as his Speech Therapy notes, and all of his ASQs and Gessell Developmental Assessments (I was so relieved when I finally found his last one, done at 39 months old, just before he was dismissed from the IDP...that is, three years and three months, for those who, like me, don't understand when people use months after a year old!) as well as the medical notes from when he was at BCCH and Genetics at a month old, and the photocopy of the questionnaire
form they wanted me to fill out for this new appointment.  I am trying hard to be thorough, and organized so I can be a better advocate for him.

 Our appointment was rather unexciting!  The doctor was good. I liked him. He has a trustworthy demeanor, and was patient, quiet and slow; he didn't rush anything. (although, at first, I was wishing he'd move along and get to the heart of our visit!)  He started out with reminding us that genetics and science can only explain so much.  He said how a diagnosis would only give us something to fill in the blanks  ("he has ___") and to give a label for the schools to deal with. He mentioned that we shouldn't put a "ceiling" on R (or any child, for that matter) and that teaching, training, encouragement and patience would get good results, no matter the diagnosis.   

We nodded and agreed, and explained that we just wanted to know if there was a reason for his delayment. The doctor suggested that we get an assessment done at Sunny Hill (which deals with rehabilitation for children with disabilities, delayments and autism)....we were supposed to be on the wait list, but we haven't heard anything in a while.  
 

The doctor was the Clinical Professor of Genetics, and the woman who was with him taking notes who I thought was his assistant was actually the Genetics Counselor.  While Rhys coloured pictures, they studied him, and then the doctor measured him (his hand length, finger length, distance between eyes/pupils, length of forehead, size of ears, size of head...) and tested his flexibility (in arms and hands: how far could he hyper extend them), listened to his heart and lungs, checked over his legs and reflexes, and chest and placement of his nipples, and his back and spine, even peeked down his pants at his bottom and front, and checked his feet. I *think* everything sounded okay with the exam, but maybe there were some comments on his feet??? I'm not too sure!

The doctor sat quietly a lot and I wasn't too sure what to say or offer when there was a silence. Was he waiting for us to talk? Or was he using the time to study Rhys quietly? Or pondering different solutions? The Genetics Counselor talked even less! In fact, I wasn't even aware that's who she was until we were home and I looked at her business card!  I found that the difficult part of the appointment. Should we have said more?

He did say that there was a test that he could run, as well as two other tests that hadn't been done before the could be done as well. (Chromosomal Microarray, Sterol Pattern and Plasma Amino Acids...whatever they mean) The results take 8 weeks and they'll call us when they're in.  We weren't able to do his lab tests at the hospital though, since they are fasting ones...and Rhys was eating fishy crackers as we waited! Oops. So I'll have to take him to the local lab for the blood test, which I am not looking forward to. They are good there, and gentle, but it will take a few of them to help with it as R kicks and cries. As awesome as they are at BCCH with drawing blood (since they are used to dealing with young patients), I am not taking an hour drive to see them just for a test. 

 Doctor Boerkoel did say that since R hasn't lost any skills, but is gaining them, (albeit slowly), that he only has mild symptoms, and that is a good thing. He did mention how R has "soft features" and is "elfish". (which is what we've heard from his pediatrician too. ...I think he's just plain cute!)  But nothing that is glaringly obvious.  I mentioned his areas of weakness (gross motor, speech, and some behavioral immaturity) and the tests for Williams Syndrome and for Fragile X , but he said his features weren't "hard" like they are with those. Both of those have tough and hard physical features....the long face, or full lips, or upturned nose.... I have always thought of Rhys as being "delicate looking", and admit that the one factor in making me second guess WS or FXS was that he didn't have it so obvious in looks. My husband did see the words Noonan Syndrome written in the file, but I had crossed that off my list because of the same thought: R didn't fit those obvious physical features. But who knows? I don't know what the note said. Maybe it was crossed off for them as well?

So that is it.  We didn't go over family history or the questionnaire, and I didn't have any questions for them and they didn't look at my binder! We left with blood test forms and no clear idea where we were headed with everything. We aren't anywhere ahead of where we were before, but it was nice to have a specialist not see anything "obvious" in Rhys, and it was good to have him tell us that whatever we discover, he only has a "mild case".  But it still is difficult to leave without any solid idea of what to do. I really wasn't expecting to have all these answers, but I guess deep down I had hoped we'd have something. But instead we are left with just waiting again.

Next step is to see where we are at with the waiting list for an assessment at Sunny Hill, get those tests done, and just wait.