Thursday, November 26, 2015

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? 

Tuesday, November 24, 2015

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.

Sunday, November 22, 2015

Who needs tonsils anyways?

Day three and five really are the worst for recovery.

Abi went in for her tonsillectomy at the beginning of the month and all has been going well. Better than I had expected. But then again, I wasn't sure what to expect since we weren't given any information. All I was thinking of were the news stories of children who have died after tonsilectomies from bleeding and hemoraging. I know those cases aren't common, but it's in the back of your head that you could be that small percentage where odd things happen. (We do have a strange medical history in this family!) So I kept picturing lots of throwing up and bleeding. Ugh.

Thankfully that has not been the case.

We went in to her appointment with only the knowledge of where to go (Surrey Memorial Hospital), what day (Nov 4) and what time to arrive (6:30am)  That's all. Oh, and that she needed to fast from midnight on. Nothing else. No tips on how to prepare, no info on what to expect, nothing on what recovery is like. It was very frustrating. (it didn't help that I couldn't even get in to the office on the phone. It just rang and rang every time I called.)

A day after her surgery, I had to laugh as I remembered being concerned about knowing too much. I didn't want to be told what the doctor would do or how. (The idea gives me shivers) I just didn't think that my non-vocalized worries would keep me from knowing anything!

(this was taken an hour after we arrived at the hospital and were getting comfortable in her room. We had been up since 5:30am...after restless sleep...and were feeling silly and tired! I'm glad that we were able to laugh a lot instead of being quiet with anxiety.)

Her surgery went well. In the past, I've almost passed out when my kids have been put to sleep. (which sounds horrible...the description that is.) But I had no problems this time. They had the Frozen movie playing in the OR (I guess they do that to distract the little kids) and Abi was relaxed (mostly) so it felt casual, which totally helped. (I'm thinking that having a child fight and cry and thrash and then suddenly fall asleep by medication does a lot to create anxiety in me, which explains the almost-passing out part) We also had a nurse int he OR that I knew; an old classmate of my sister's during their nursing student days. That was so nice to have! It gave me comfort.

What surprised me is that it is only a half hour procedure. I was barely back in her room when the doctor visited me to say all went well and to give me some recovery tips. Such as no straws, only soft food, and that day 3-5 would be more painful, but as long as we kept up on her pain medication, she should be okay.

And it has been okay. Abi had made herself cozy on the couch, mostly playing on her Ipod. We would both get up in the night for Advil and Tylenol (I slept the first night on the other couch with her since I was getting up every 3 hours for her) and if she missed her scheduled medication she could tell. For the most part, things have been good and her pain has been low. But when she hit day three, she had a headache, earache, jaw pain and sore throat. (all normal) Her voice has been really weak also, and her throat doesn't like to swallow so dinnertime was painful.

 (I took and posted this picture with her permission. It makes us laugh. She's tired and sore and bored of the being home and only eating Popsicles and yogurt!)

I was feeling concerned about her recovery though. We were told 7-10 days and at day 9 she was still in tons of pain and needing to take something every 5 hours. I told a friend that if she was still in pain on day 10, I'd take her to the doctor again. I wasn't expecting her to be any better, and said that it would take some sort of miracle for her to be suddenly healed enough in one night. And guess what happened? She missed her nighttime medication and ended up going 12 hours without! What just happened? I was so surprised! The next day, she was even better! Wow! I guess we got our miracle!

Hopefully with no tonsils to bother her now, Abi will have a healthier winter. Last year ended with strep throat and this year started with tonsillitis, missing 2 weeks of school. Although having your tonsils removed doesn't mean that you won't get strep throat,  it is supposed to be a lot less. Hopefully it'll help with her asthma as well. So we'll see.

Friday, November 20, 2015

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.

Thursday, November 19, 2015

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. Birthdays

Kai is 12 now, which is crazy because I thought for sure he's already been 12! He's more of a teenager than a tween with adolesence hitting. I am loving this new stage of life for him, to be honest. It's so good to see maturity and passion and kindness show up more often.

2. healing

It took her the full 10 days to finally be able to control the pain better, but I am so thankful that Abi is starting to get back to normal again! Her voice is still weak and sore halfway through the day, but she's back at school and all feels right!

 3. big brother help

I caught Rhys one morning zipping up Eden's jacket for her as we were leaving for school. How sweet! Sometimes having an older brother is the best!

I am so thankful for his gentle spirit and for his seeing a problem and doing his part to fix it! It made my heart happy.

4. Remembering the sacrifices made

With Remembrance Day just past, I am so thankful to consider all of the lives that were effected to keep us safe in our homes and our country. The soldiers, the doctors and nurses, the families that had to give up husbands and sons and daughters.... so many sacrifices; it's overwhelming.

I am so thankful.

5. warm safe home

I am so thankful for heat and protection and blankets and boots and jackets and warm meals...all the things that we had to keep us safe and cozy while the world was pelted with rain and harassed with wind over this stormy week.  We have it so good! I am thankful for so many things.  (*I am also thankful that my parent' power only was out for 12 hours and that they were still able to stay warm despite that. In the same theme...I'm thankful for cell phones so we can still be in contact despite no power!)

6. Giving friends

I was out for lunch with a friend this past week when my debit card was noticeably missing from my purse. (which is strange since it is always in this one spot.) I searched and searched, feeling perplexed, when my friend offered to pay for my lunch so that I didn't have to put the small order onto my credit card. I am so thankful for her quick willingness to do that. I can't think of any of my friends who wouldn't, but is such a blessing to have a friend who does that immediately! I am thankful for her gift. (and I am thankful that the kids found my debit card in the back of the van...after an unnamed preschooler took it out....and that I was able to give back to this friend)

7.  coffee dates

I am thankful for the times that Hunny and I are able to pop out for a quick coffee date just to spend some time chatting without kids always at your feet or demanding attention or just irritating you with their bickering.     

 My Hunny is a Starbucks drinker, so we often end up at the one near us. (I'm not as picky.) I got my plain red Holiday cup from Starbucks and I wasn't offended. It's a bit boring this year, but nothing that effects me too much. (haha. What a huge waste of time and attention that non-story was this past week!)

8.  Upcoming change

My Hunny was offered a part time teaching position at a local college , starting next semester! This job wasn't something he was trying for or something he was thinking he'd end up doing, but it was something that was presented to him about a year ago just as an idea. Funny how God moves things and opens doors you hadn't thought of before!  I am thankful that this has come up and that it has brought excitemement (and nerves) to my Hunny. I am thankful that God loves surprises too!

9.  Babysitting Play Dates

I got to babysit all of my little nephews this week and it was wonderful! I haven't babysat them in months, since they didn't need me anymore. It was fun! It was only for an hour and half, but it was actually enjoyable!  I had Eden there and the three boys, so four kids aged 4, 3, 21 months and 2 months old! It reminded me of the days when I had little kids all around. (I never had four in that short of an age gap, but I always seemed to have a toddler and a baby at the same time, lol ...Or so it seemed.)

10. Classes that go better than expected

I teach a class of 3-yr olds at my Bible Study group (BSF) and this week our classes and Leaders changed, so we weren't too sure how it would go. Instead of me being in a team of 4 leaders, we were now separated into smaller classes so it was just myself and another woman. I am so thankful that it all went well and that we felt confident and that the kids had a good morning. Phew!

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