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.

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.

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.

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.

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!

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.

Fatigue and more mysteries

My heart is all jumpy right now and my body is weary.  I hate it when it gets this way.  Despite being exhausted, I am still unable to fall asleep before 1am all week, which really sucks. You know that your life needs a huge change when your preschooler asks you, "why are you always tired, Mom?"  *sigh*  I wish I knew.  But I am getting my bloodwork checked again this weekend. Surely it must be my thyroid. Please let it be my thyroid. Then my doctor can change my medications and I can hopefully, maybe, feel the slightest bit more energetic. (and when I say "energetic", I mean not having to take a nap or two or three a day.)

I saw my doctor this past week, but she is still suggesting that my pain and fatigue are from having "so many children" and the stress that brings.  I am willing to admit that I have some things happening in my life that could be considered stress. But I am not going to say that mine is more than anyone else'. Don't we all worry about finances and the house being a mess and having to plan three birthdays, a baby shower, teacher's gifts, father's day, and end-of-the-school-year events in two weeks? Oh, maybe not. Well, this month is a bit more crazier than typical, I guess! June starts our busy family time and it carries on until September. Tons of birthdays and things to plan and figure out!

As for having many children. To be honest, I've said this before and I will say it again, once you have three children it really isn't that much of a change adding another. By the time you have five, you start to get into a rhythm of things. Yes, our house is loud, and yes it is messy, and yes it can get busy, but it really isn't that hard. But it's one of those things that you have to be in to understand. There are many things that I don't "get" and couldn't imagine living through, but if it's your life, it's what you do and you somehow manage. I have a friend who is a single mom to two girls. How does she do it? I can't imagine being that patient all.of.the.time, or never getting a break (I love it when my Hunny can come and help take over when I need a breather or two, because I often need those. I'm not that patient after all.). And having to carry the weight of the finances? Wow. Now, that is stressful in my mind! Don't talk to me about how my fatigue is due to many kids....there are so many out there with it harder than me! (although, my friend may not think it is a big deal since she is used to doing it all alone for a few years now.)

My doctor says that I "need to find a week of nothing to do."  I asked her how do I do that. She suggested a "Staycation."  Are you kidding me? I'm a stay-at-home-mom. I"m not too sure how staying home (something I already do) would reach those parameters of "finding nothing to do." There is always something to do in this house! (I just may not do it sometimes, haha, looking at the state of my house right now)

My chest aches and my body is weary and I can hardly stay awake and my heart is racing and jumping around like a fish.  I am starting to see how it could all be related, though. The more tired my body is, the more my heart will feel 'jumpy" and the more likely I am to get chest pains. I just don't know what is causing that fatigue. Just when I think I have found a possible solution, I find it just adds to the list in the end. It turns out that fatigue can be a symptom of many different things!

Remember me having to see the Cardiologist in December? He had booked me in for a Stress Test and an Echocardiogram, just to make me feel better.  The Stress Test went okay, and the Echo was booked for January but I had to cancel it since it fell on the same day that I was going away for the weekend. The idea of making a drive all the way in to Vancouver General Hospital that afternoon and then driving all the way in the opposite direction to Harrison Hot Springs didn't appeal to me!  I got a new date for that appointment for May. 

 In the end, the Echocardiogram was easier than I anticipated! I had seen Kai have them done yearly for 8 years, so I knew what to expect, but I was a bit self conscious. As much as I tell myself that these specialists have seen several breasts, that they don't actually pay attention to them at all, I still felt nervous being disrobed in front of a stranger. (in the end, the radiologist had me covered up with a towel and didn't even look at me! He stared at his screen the whole time and was very professional. Silly me and my worries!)

My follow up appointment with the Cardiologist was to be expected. He said that my Stress test was Normal. My 24 Hour Holter was Normal. My Echo was Normal. Everything is good and fine. But oh, the Echo discovered that I have  Mitral Valve Prolapse.

What? How is that "normal"?

According to the Echo, the Prolapse is tiny and hardly noticeable. The doctor said that he wouldn't know I have one if it didn't say so on the report, since he can't hear it on the stethoscope. So I guess that's a good thing.  He wasn't concerned about it and said that I shouldn't either, so I chose to believe him!  I go back in a year for another Echo to see if there is any change.

Of course, when I got home, I suddenly had questions (why do I never think of them in his office?) and I had to Google what a Prolapse was!  I found out some interesting stuff. Such as this, from the Mayoclinic website:

When signs and symptoms do occur, it may be because blood is leaking backward through the valve (regurgitation). Mitral valve prolapse symptoms can vary widely from one person to another. They tend to be mild and develop gradually. Symptoms may include:

• A racing or irregular heartbeat (arrhythmia)
• Dizziness or lightheadedness
• Difficulty breathing or shortness of breath, often when lying flat or during physical activity
• Fatigue
• Chest pain that's not caused by a heart attack or coronary artery disease

It blew my mind! Are you kidding me? This could totally explain so much! I was actually giddy at the idea and I felt that I had my answers! Hooray.

Except when my own doctor said that my "leaky valve" is so insignificant that I wouldn't even feel any symptoms.  Oh. Well, that's good, I suppose. But I liked having some answers!

So we're back to "stress of having many children."

Please let it be my thyroid.


***another interesting thing that I was reminded of when I was telling my mom of my cardiologist appointment. My Opa has MVP. He has had it for years and had the valve replaced at the age of 70 with a pig's valve. They usually only last for 10 years, but his has been going for 15!  
***The cardiologist said that I likely had this since birth. Well, THAT would explain a LOT of things too in my life.  If only it could....

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.

*sigh*

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.

updates

Well, I got my MRI results in the mail on Friday, which surprised me. I didn't know they would mail them out! I saw my rheumatologist yesterday (Wed) as well for results, which he just confirmed for me. I have no signs of Anklyosing Spondylitis. Hmm… So after two years of thinking this is what I had, we can close the book on it! It's bittersweet, to be honest. I don't want it, I'm glad I don't have it, but it's strange to NOT have it. If that makes sense.


So what is it??? That's the frustrating part. We need to start looking again. The dr did say that we just may never find an answer but find that the pain can be controlled with back exercise. I can deal with that, I guess. The MRI letter did suggest that there was a "possibility of a fairly long syrinx" Of course, I HAD to look that up b/c I had no idea what it was! It's another word for a cyst, and from what I looked up, it's pretty painful! One site went as far as saying "severe disability"! Eek! So I was feeling a bit worried about that. My husband told me to stop looking up things! LOL Well, the dr didn't even bring it up! So I did! He basically told me not to even think about that, there was nothing to worry about, I didn't have the symptoms! Phew!!! That was a relief! He also said that my back wouldn't be sore from disjointed hips or pelvis from childbirth, and said he's never seen a case where that actually happens!


Back to the drawing board. I have another X-Ray next week sometime (when I can fit it in) and we'll see if that shows anything. I'm not expecting it will though, but maybe I'll be pleasantly surprised.


Other good news is that my thyroid has gotten better… or that is, my prescription has gone down for my meds, so that's a good thing. I was told it can fluctuate every few months though, too, so maybe this isn't something to cheer about, but I thought it was! This is the first time it's gone DOWN since I was diagnosed with hypothyroidism in 2005!!!


Also, my eyes have gotten better and my prescription for glasses has gone down. Yay! The optometrist said that my contacts have been "good" to my eyes. Typically they aren't! So that's nice to hear. He checked the kids too and they're eyes are perfect, which is a relief. Even Bryn's eyes are good, and he's farsighted like he should be! :)


So other than everyone has colds/flus, we're doing well! It's always good having good news going into Easter, isn't it? I hope that everyone has a wonderful weekend, and that the power of the weekend is real to you, and may you feel blessed.

{{{hugs}}} to you!

MRI

Well, it turns out I AM claustrophobic!!! (roll eyes) *blush* Let's just say that the MRI machines on TV are much bigger than in real life!!!! I was feeling okay at first and I laid down on the movable bed and she was telling me how it is hollow and how it opens at the end, and she starts to move the bed in a bit. I closed my eyes (she said there would be a light there) and then opened them when we stopped so she could adjust me so that my spine was aligned. She stuffed some pieces beside my head to keep it still and even put a blanket over my legs and tucked me in! :) Everything was fine; it didn't look too bad for room at this point. Then she started to move the bed in further, so I was in up to my shoulders. I opened my eyes and MY GOODNESS!!!! It was no longer "cozy" at all!!! The ceiling is literally a few inches from your head!!! I started to feel a *bit* nervous and asked, "can I come out?" It's a good thing that this girl was understanding b/c if she didn't move that bed back I don't know how well I would've taken it!!! I honestly did not think I could do the test! And I kept thinking, dang! If I knew it was THIS bad I would've said yes to being claustrophobic and I could've had a sedative!!! lol But you needed to come half an hour earlier for that! grrr. So I had to think: am I taking this test or not? Can I do it? I do NOT like giving up, but I'm also wise enough to know when it's time to step away. I decided to try again. May (the young woman setting everything up) gave me some water and let me relax and breathe, then I laid down and she covered my eyes with a cloth (which I thought would make it worse!) and we started the process again. I kept my eyes closed and she slowly moved me in, stopping several times to ask how I was doing. I was fine. Really. I could do this! Then she went to the other room to start the machine and such, but she would talk to me through a mic and I'd respond through the one in the machine. (While it's running though, it's too loud, so she can't hear me, but that's why I was given a panic button in my hand!!!) I did peek a few times out of my cloth and could see the lights on the (very close) ceiling, but I wasn't freaked out this time. I was trying my very hardest to remain calm!

What got me through it was trying to pray and trying not to let my mind wander to scary thoughts. (suddenly all you want to think about it being trapped in an elevator, or being buried alive, or getting stuck in a cave!) I also had this song running through my head that was on the radio on the way in. I can't recall the name or who it's by, but it goes, "I love you more than the sun, and the stars that I taught how to shine, you are mine, and you shine for me too. I love you, yesterday, and today, and tomorrow. I'll say it again and again, I love you more." (edited to add: the song is called More by Matthew West) I also decided on a course of action if, by chance, I DID get stuck in there!  I figured that I could easily kick out that sponge from my under my knees and scootch my bum slowly until I got to the end!  *wink*

May did frighten me a bit 15 minutes into it though (it's appx. a 40 minute procedure) when she said, "ok, it's going to be quiet now while I set up for the next part." And she was right! It WAS quiet. Too quiet. She may have only taken 2 minutes, but man, it sure felt like 10! And I was laying there in silence, in a box, feeling a *bit* claustrophobic again! I called out, with a hint of fear in my voice, "May?" She immediately pipes up, "Yes? Are you okay?" in the speaker. Oh phew! Such relief to hear her again! She didn't leave the building or anything! "How much longer?" We started up again within 2 minutes, and I was fine!

The machine IS loud (they give you ear plugs…no radio like my hunny got for his knee MRI, though!) but it wasn't too bad. It sounded kind of neat. It actually was the silence between each set that made it difficult for me! See, the machine was taking pictures of my whole spine and SI joints, and it would go and whir and make loud clinking noises as it did that, but b/c it had a lot of pictures to do it would run for 4-6 minutes for each set. So May would tell me, "okay, the bed is going to move, then it will be noisey again for 6 minutes", then it would go quiet after and she'd input info or Whatever she was doing, lol, then tell me that again. The 40-mintue procedure was a LOT easier to handle when it was broken down like that for me. I liked being able to focus on, "okay, just 3 more minutes,… Okay, this isn't too long, just another minute or two…" although, six minutes can sure feel terribly long when you can't move and you're starting to get uncomfy!

So I survived! Long story short. (or as short as is possible for me! lol) Another thing I didn't anticipate was how sore I'd be. My lower back started to ache and pinch, and I was in pain by that night. I"m not too sure if it was from the test or laying so long on a table or what, but it wasn't nice. The pain still hasn't left, 3 days later though. :( Of course, I am out of my Naproxin pills, grr, which doesn't help. It's funny though b/c I am convinced the naproxin doesn't work b/c I'm still achey, but when I don't have them to take I am in a lot more discomfort! Phooey. I'm taking Tylenol with codeine, not that that's helping, but I'm hoping that maybe one time it will! I see my rheumatologist next week for the results (and another script for NSAIDS!)

*phew* There's the story!

free MRI anyone?

Today I had an appointment with my wonderful Rheumatologist. He is such a sweet older gentleman. (so sad to think that one day he'll have to retire) I haven't seen him since last year January. I was supposed to see him again in April 06, but cancelled it b/c I was feeling so ill and just not up to driving an hour in traffic to see him in Richmond. (pregnancy really wipes me out, my body doens't seem to like it) So I of course, had to get my GP to get me a freaking referral to see my own rheumy again. (rolleyes) This was just basically for a checkup, seeing how things were, what he thought, how I was doing since having Bryn, stuff like that.

He asked me how I was feeling and I told him that my meds aren't helping. I take 500mg Naproxin 2x/day. The first one is usally taken by 7:30am and I'm not feeling any less stiff until noon, which leaves me unimpressed. I'm not in terrible pain, I'm just sore and stiff, that's all. Niggling. He ends up asking me all these strange questions that leave me wondering "is he serious? are these really connected or is he just making conversation?" LOL He looked at my throat and eyes (which made me worried: I'd just scarfed down a McChicken in the car on the way to the apt, lol. Oh please don't let their be leftovers hanging out in my teeth or on the back of my tongue!!!) then he wanted to know if my eyes were itchy or if my throat was sore. Hmm… I said that they were a bit sore last week, but I likened it to a cold, so he asked if I coughed. Then he wanted to know my other meds (synthroid, and birth control) and he asked if I was breastfeeding. (sortof) Wanted to know if I got dizzy or had headaches. (yes, mostly at night–I figure it's from lack of sleep)

He asked about my back pain and where it is located (across my waist and up to my mid-back, always in the morning, usually all day actually!) I have higher back pain, but for some reason didn't tell him that. I guess I figure that's caused by other stuff unrelated to this. He asks if I get pain higher across my shoulders and neck. Yes. In the morning? No. Oh, then it's probably just a "mom thing"!  He got me to stretch out my arms, which he squeezed at the elbows and the wrist and finger joints, asking if it hurt. Nope. Not until he stopped, that is! He did the same to my legs! And my back! This is where my sweet gentlemanly doctor gets all evil: (beware, it's not nice!!!) He gets me to lie down on his funky bed (it's at stool height, then with you sitting on it, he pumps this lever with his foot that raises it higher, up to his waist level, how fun!!! sortof like a dentist chair!!!) and then tests my reflexes with a hammer (Kai wasn't too sure he liked that part, lol) and tickled the bottoms of my feet with a firm stick-like instrument and then freaked me out by pressing a vibrating prong on my toes to check my senses! He gets me to bend over and (attempt) to touch my toes and he presses on my shoulders. He wants me to raise my arms above my head and bend over on each side, while pressing on me. He asks me if I have chest pain or trouble breathing. Oh, ALL the time, but I didn't mention it b/c I guess I also think that is from something else. (I'm so silly, I NOW have a great example of the chest pain I get) He presses upon my upper chest, between the breasts (hey, he's a nice and decent man, so nothing creepy happened!!!) OWIE!!! That hurt a lot! He thinks the chest pain is related. :( Damn!!!! All of this sounds harmless…unless you've had this done before and suffer from pain!!! OWIE! My body is in SO much pain right now!!!! *pouts* Parts that didn't hurt before until he manipulated them ache! Enough to make you wonder if these are pressure points that eventually WILL hurt one day or is he just strong and I need to work out my muscles more? LOL

At conclusion, he still thinks I have Spondylitis. Which is nice to hear. Well, I don't want it, no, but it's better than after thinking it's it then changing your mind later, you know? He gave me an Unofficial Diagnosis in 2005 with Anklyosing Spondylitis, but when I had my CT Scan in Jan 06, it showed nothing. Every test I take doesn't show anything. I don't have the HLA-B27 tissue type. It's this one cell count that is too high or something that tells him something is happening to me. All the symptoms suggest it, but we have no evidence on tests. But he is still convinced. After all, it is harder to detect in women. Anyways, he says that this one medical company that does testing and such has come up with an offer for them. I thought he was going to suggest me to do some sort of drug testing, but instead, this group is offering to do FREE MRIs!!!! So he's signing me up for one! woohoo! This is a good thing, right? I'm not too sure if it will do anything, and the idea of having an MRI terrifies me, but we'll take it one step at a time! So he had to ask me these questions to fill out the forms: on a scale of 1-10, 10 being the worst, how has my fatigue been this week. 10. "really? it hasn't been worse?" no. Hmm. (although, now I'm remembering that it HAS. So maybe I'm only at a 8 or 9 this week.) How would I scale my severity. 6. How much pain on the scale? 7 or 8. ***the funny thing (maybe not FUNNY, per se) is that I'm not constantly doubled over in pain, but I AM in pain. I am in constant discomfort and wish I could just stretch it out. It IS higher than a 5, which would be considered 'medium' or 'moderate', right? So I can justify 6, even though it does sound high.*** Soooo…. he will fax off the info and the receptionist will call me with an appointment. Then I'm to book a follow up with him 2-3w after it's done. I'm not too sure how long it'll take to get one done. I've heard you can wait for a year for an MRI… Jenn (SIL) has been. Meanwhile, my Hunny got in within a week after he dislocated his knee (wonderful Worker's Comp!) and this is a private organization as well, so I'm sure I'll get this done fast! Neat! He told me it's an MRI of my sacoriliac joints….just for you medical people out there! (MOM! JULIE! lol)

When I think of what this disease WILL do to me and my body, it scares me. I try to talk about it with my husband, try to make sure he understands, but he wants to be the Man, the Protector, he wants me to not think about it, to remain positive, maybe I won't have it "that bad". Poor silly man! I love him. There was an article in the local newspaper a few weeks ago of a 63-yr old woman with AS (rx at 14) who is trying to advocate the government (amung other arthritis sufferers) to get them to include this one drug in their coverage. Remicade. I've heard of it, but don't know why. Likely an American magazine ad, they like to advertise in mags and such, unlike Canada… or at least to the same degree. This woman's back is fused and when sitting up against a wall, her back is 4 fingers away from it b/c of that, and it is working it's way up her neck. (which makes me worried of that happening to me…already I feel concerned about my chest–not just because of today though!) She's had surgery to help, but it's deteriorated again. Sad. :( Scary.

I'm supposed to sit up straight more, but I admit it is hard. When my back is in pain (which is every day) I just want to slouch over. It actually feels better when I do! When I am in a LOT of pain, I imagine myself bent over a huge rubber ball, relieving pressure from my back. In a postion I shouldn't be in!

I'm not trying to be depressive or anything. I certainly don't feel that way. I'm just talking. This is something that my future holds, most likely. I can handle that… sort of! My chest is in pain as I type, and breathing is hard. It's not asthma. It's from something else, something I can't prove or explain. But it feels like my chest is tight and can't expand, but sometimes I don't feel like I care. I'm so tired and exhausted that it's as if my body doesn't WANT to put the effort into taking a deeper breath. This has been happening a LOT for a year now. I thought it was to do with being pregnant, but it hasn't gone away yet. Hmm…

Ok, I'm done now. I'm starting to scare myself!!!  I just wanted to let you know how the apt went today. I *may* be getting a free MRI! Woohoo, why not? *wink* LOL I have some blood work to do (hematology profile, s. creatinine, ALT, Alk.phos, C-reactive protein, ECR….for those medically interested. I haven't a clue what they mean, lol) I'll do them when I FINALLY go in for my thyroid testing!!!

**oh! and that reminds me: my rheumy told me that my doctor is moving away next month!!! Eek! I'm so pleased that she informed me!!!! What was going to happen… I call up for an apt and they tell me that she no longer lives in BC??? She's moving to Nova Scotia. I'm happy for her, but I"m going to miss her. Ah well, she never got to deliver any of my babies anyways! (she tried, and I tried, but it wasn't my fault she went down to check her mail when I was 10cm and Kai was born!!!! sheesh!)