Friday, December 25, 2015
Thursday, December 24, 2015
The kids were in their new jammies as we watched A Charlie Brown Christmas before this evening. And that's when it really started to feel like Christmas! After they were tucked into bed (fifteen times!), my Hunny and I tackled the gifts wrapping and enjoyed the (eventually) quiet house together. We don't sit together like this often enough, usually we have distractions of tv or phone as background filler. Tonight was just a perfect evening of listening to favourite carols and resting.
I have been listening to a lot of Pentatonix lately. I'm not usually a fan of A Capella, but they do it so beautifully. Most of it sounds like a choir singing with their mix of harmonies, which I love. Their version of Silent Night is amazing!
From my Clan to yours: Have a wonderful Christmas. May it be full of family and happiness as we celebrate His gift to us.
May your night be filled with peace.
I have been listening to a lot of Pentatonix lately. I'm not usually a fan of A Capella, but they do it so beautifully. Most of it sounds like a choir singing with their mix of harmonies, which I love. Their version of Silent Night is amazing!
{You also need to listen to Mary, Did You Know? <<< click here
From my Clan to yours: Have a wonderful Christmas. May it be full of family and happiness as we celebrate His gift to us.
May your night be filled with peace.
Saturday, December 19, 2015
Noel
Love incarnate, love divine
Star and angels gave the sign
Bow to babe on bended knee
The Savior of humanity
Unto us a Child is born
He shall reign forevermore
Noel, Noel
Come and see what God has done
Noel, Noel
The story of amazing love!
The light of the world, given for us
Noel
Son of God and Son of man
There before the world began
Born to suffer, born to save
Born to raise us from the grave
Christ the everlasting Lord
He shall reign forevermore
Noel, Noel
Come and see what God has done
Noel, Noel
The story of amazing love!
The light of the world, given for us
Noel
written by Matt Redman, Chris Tomlin and Ed Cash. This version sung by Lauren Daigle.
So incredibly beautiful. So peaceful.
Love incarnate, love divine
Star and angels gave the sign
Bow to babe on bended knee
The Savior of humanity
Unto us a Child is born
He shall reign forevermore
Noel, Noel
Come and see what God has done
Noel, Noel
The story of amazing love!
The light of the world, given for us
Noel
Son of God and Son of man
There before the world began
Born to suffer, born to save
Born to raise us from the grave
Christ the everlasting Lord
He shall reign forevermore
Noel, Noel
Come and see what God has done
Noel, Noel
The story of amazing love!
The light of the world, given for us
Noel
written by Matt Redman, Chris Tomlin and Ed Cash. This version sung by Lauren Daigle.
So incredibly beautiful. So peaceful.
Thursday, December 17, 2015
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.
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.
Sunday, December 13, 2015
My heart is overwhelmed. My Opa peacefully entered into the arms
of Jesus this week. As I listened to Christmas Carols on the radio, I
was filled with awe that he was singing them in praise now! What a
reward! I am so thankful for that surety of his life in heaven and can't
help but wonder how those without Jesus Christ face death. I am at
peace, but I also am sad that he is no longer with us (and its hard
living so far from family) but I have that hope for an eventual reunion.
I am so thankful! I will miss you, Opa!
My heart aches.
This is hard.
ROEPER, Pieter- Monday September 9, 1929 - Thursday December 10, 2015
Pieter Roeper passed away peacefully at the Belleville General Hospital on Thursday December 10th, 2015. Pieter Roeper, of RR#2 Stirling in his 87th year. Son of the late Cornelis & Trijntje Roeper. Loving husband of 63 years to Ada (Boulogne). Father of Alice Peters (Stephen) of British Columbia, Karin Bouma (Fred) of Belleville, Connie Reed (Bob Grzela) of Rockland, Peter (Kathleen) of Shelburne, Jim (Cathy) of Stirling, Fay Sarra (John) of Markham and John (Ingrid) of Belleville. Survived by his sisters Tineke Roeper (Sip Vermey) and Willy Hanskamp (Joop) of Holland. Predeceased by sisters Alida Bas (Flip), Henny Stark (Jac) and his brothers Jan (Aagie), Henk and Cornelis (Elly). Dear Grandfather of Mark, Lori-Anne, Julie, Peter, James, Heather, Francine, Craig, Kyle, Curtis, Ryan, Tiffany, Erica, Charles, David, Katrina, Nicole, Michelle, Rhiana, Aaron, Elysha and 22 great grandchildren. Predeceased by grandson Matthew and great grandson Quinn. Friends are invited to call at the STIRLING FUNERAL CHAPEL LTD 87 James St. Stirling (613-395-2424) on Sunday from 2-4 & 7-9 p.m. Funeral Services will be held at St. Andrews Presbyterian Church, Stirling on Monday December 14th, 2015 at 11:00 a.m. Officiated by Rev. Morley Mitchell. Interment Elmwood Cemetery. If desired, donations to the St. Andrews Presbyterian Church would be appreciated.
Online condolences www.rushnellfamilyservices.com
Pieter Roeper passed away peacefully at the Belleville General Hospital on Thursday December 10th, 2015. Pieter Roeper, of RR#2 Stirling in his 87th year. Son of the late Cornelis & Trijntje Roeper. Loving husband of 63 years to Ada (Boulogne). Father of Alice Peters (Stephen) of British Columbia, Karin Bouma (Fred) of Belleville, Connie Reed (Bob Grzela) of Rockland, Peter (Kathleen) of Shelburne, Jim (Cathy) of Stirling, Fay Sarra (John) of Markham and John (Ingrid) of Belleville. Survived by his sisters Tineke Roeper (Sip Vermey) and Willy Hanskamp (Joop) of Holland. Predeceased by sisters Alida Bas (Flip), Henny Stark (Jac) and his brothers Jan (Aagie), Henk and Cornelis (Elly). Dear Grandfather of Mark, Lori-Anne, Julie, Peter, James, Heather, Francine, Craig, Kyle, Curtis, Ryan, Tiffany, Erica, Charles, David, Katrina, Nicole, Michelle, Rhiana, Aaron, Elysha and 22 great grandchildren. Predeceased by grandson Matthew and great grandson Quinn. Friends are invited to call at the STIRLING FUNERAL CHAPEL LTD 87 James St. Stirling (613-395-2424) on Sunday from 2-4 & 7-9 p.m. Funeral Services will be held at St. Andrews Presbyterian Church, Stirling on Monday December 14th, 2015 at 11:00 a.m. Officiated by Rev. Morley Mitchell. Interment Elmwood Cemetery. If desired, donations to the St. Andrews Presbyterian Church would be appreciated.
Online condolences www.rushnellfamilyservices.com
Friday, December 11, 2015
I love Gungor for their incredibly touching lyrics, breathtaking music and heavenly voices. And this new song is no exception.
Oh Light / Gungor feat. All Sons and Daughters
Oh Light / Gungor feat. All Sons and Daughters
Thursday, December 10, 2015
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. Pretty Nails
Eden found some nail polish and I relented and let her paint her nails. I know. *cringe* And then I let her paint my nails too. *twitch twitch* She got it all over my fingers and it makes my cuticles look even worse, but she was pleased with herself. So we showed off our fingers to everyone and we ooh'ed at how sparkly they were and it was fun!
2. fort building
The Youngers are getting good at fort building in our house. I love memories like these!
3. this girl
seriously. How did I get so lucky?
Happy 14th birthday, Abi!
4. oh Christmas tree
I love our family tradition of going to a tree farm (support local!) and finding our own special tree! I grew up with a fake one that we pulled out each year on the 3rd of December, which I love and miss that family tradition, but I love that my own family can have their own. I'm thankful that it wasn't that cold this year for our outing!
{group hug for our fave tree!}
5. strength and covering
I was suddenly thrust into the role of leading the whole morning with my children's group as my co-leader wasn't able to come, which made me a bit nervous, but mostly confident. And let me tell you that I wouldn't have that confidence if it weren't for the Holy Spirit. It's one thing to have the talent to lead a group of kids, but it's another to have no worries as you rest in the fact that it's His words that are being said. I am so thankful that even though the kids were restless more than usual, the morning went really well. I had energy and spirit and Joy!
6. new-to-her princess dresses
Eden found a bunch of old dresses that Abi used to wear (and make her brothers wear too, come to think of it!) They're still a bit big on her, but she is so excited!
I let her wear one to bed, along with her new "hair pretty" and she giggled while being tucked in, saying, "Mama, I'm in love with you!" She melts me.
7. beautiful voices in harmony
I'm not too sure if you can tell or not, but I love music! :) I love choirs. I love orchestras. I just love beautiful harmonies and lyrics. My heart was so lifted this week to hear a bit of Abi and the high school choir practicing after school. I am thankful that we are created to sing.
8. sudden visits to my parents
I am so thankful that I have been able to just suddenly go with my sister this week to visit my parents while my Opa was in the hospital. We don't live near our extended family (they are in Ontario), and so it's been difficult, but we have eachother. I am thankful for tea, tears, laughter, and comfort.
9. Crafty Affaire
The girls and I had a morning outing which started with a walk around the Crafty Affaire market in White Rock (support local!) and ended with lunch together. And, yet again, I meant to take photos but forgot to. Oops. You'll have to trust me that it was a fun time. It helped that I won tickets for entry through Instagram! yay go me! (I won last year too, but wasn't able to attend as it fell on the same day as Kai's bday party.)
10. almost meetings
I am thankful for laughter and being silly. I was walking through the grocery store with my husband when I saw anther man I recognized. We had already had a strange day of many coincidental meetings with people we knew, so I thought it was another friend. That is until I realized I recognized this man through his wife's blog that I read often! I suppose I could've said Hi when I saw the whole family, but I thought it may be strange since they didn't really know me, but now I'm realizing that was silly and I should've! Maybe we'll have another chance encounter....now that I know where she shops! *wink*
So that's my week (or two) in a nutshell. How about you? What are you thankful for?
Thursday, November 26, 2015
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
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:
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.
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
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!
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 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.
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
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.
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.
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