Showing posts with label cardiomyopathy. Show all posts
Showing posts with label cardiomyopathy. Show all posts
Thursday, August 20, 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. Friends who gather
We were invited for a family bbq over the weekend to a friend of Kai's. We didn't know them very well, but this was a great opportunity to get to know eachother better. They have four children (their youngest will also be in preschool with Eden!) and seem to have a lot of similar thoughts and lifestyle as us. It's so good to meet people who you can connect with! I am thankful for new friends,...and that it was such an enjoyable time that the kids didn't want to leave!
2. My book readers
Some of the kids joined the Summer Reading Club at our local public library this year. I don't know why we haven't done it before! This week ended their seven weeks of reading, so they got their medals. They boys were pretty excited about that!
I am thankful that they love books!
3. Art Recognition
Abi entered the drawing contest at the library and won! This was for last months' contest, but we were finally able to go down and get a picture of it hanging on the wall! I was impressed! I love Abi's chibi drawings!
4. Birthday Fun
Rhys was so excited; he has been waiting for three weeks (since he first heard about the invitation) and the day finally arrived: he was going to his friend's birthday party! Yay! It's so nice that he is able to go to parties now and that I can actually drop him off and return later!
5. clearing the air
I was worried that a friend was upset with me and it was all so silly. It was just my own worries over nothing, but the more I wondered the more it felt real. When I saw her this week, I was nervous how it would be again, but to my delight, it was perfectly fine! She showed no signs of feeling indifferent towards me, quite the opposite actually! I am thankful that there was no need for me to convince myself that she wasn't happy (but when is there a need to do that?) and I am so thankful that she still loves me and wants to get together soon! What a weight off of me! Dumb imagination of mine!
6. sister bonding time
Abi and Eden were in Abi's room, colouring pictures and hanging out together "bonding", Abi said, when she took this selfie! It makes my heart happy. I am one lucky mama!
7. Bear hug
There are still a lot of wildfires going on in BC (and plenty all over the place. A friend of mine in Oregon is dealing with the smoke of fires now too) but I am so thankful for all of the work and efforts of the man brave firefighters.
8. Stress Test
Kai had his annual cardiology appointment this week at BCCH. Along with his usual Echocardiocram and ECG, he also had a stress test done. He's never had one done before, so this was new! He did well, considering!
Good news is that his heart is good and there is no change. That is, it is still enlarged (it's approximately 1 year bigger than it should be), but it hasn't gotten bigger, and his test results look good and he is showing no concerning symptoms. I am so thankful for that!
I am thankful for his Cardiologist and the Cardiac team at BCCH. We've been going now for 10 years. That's incredible to think of!
9. Invites
Abi finally got together with her group of friends this week! (well, almost all of them. There are 13 in the group, and a few couldn't make it of course) I love this group of teens! I hope they stay close and continue to grow together as they enter high school in a few weeks.
I am also thankful that the host of this gathering also included younger tween siblings. So Kai got to go, along with his friend. That was so nice and unexpected! I don't know how many things he'll be invited to with Abi and her friends, but I remember the few opportunities I had with my older brother when we were teens, and it was so cool!
10. cozy evenings
I'm thankful that this week, my Hunny and I have been able to spend more time with eachother. Yay! We've just been sitting together watching HGTV after the Youngers have been put to bed, but still, that's a big step. I was surprised actually at how much more happier I was, and how I viewed our relationship in a better light, just after spending an evening together in the same room! (he likes to watch tv and I like to write or waste time on Pinterest, and we're often in different rooms) I am thankful for small things that help.
So that's my week in a nutshell. How about you? What are you thankful for? I'd love to hear your list and celebrate with you!
Friday, August 7, 2015
** Oops, a day late. We had a busy 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. Long Weekends
It was BC Day on Monday, which meant a long weekend. What's not to like? My Hunny took Friday off as well, giving us four days with him, which is always great!
2. BBQs
We spent our long weekend hosting a BBQ with some friends on Saturday; the kids splashed and played in the pool, and the adults sat around talking. It was nice getting to know a few of our friends better and for the kids to get together with friends again!
On Sunday, a friend of my Hunny's invited us over to their house for a BBQ. They have a large property out in Chilliwack where they breed rabbits and raise many other animals (chickens, ducks, pheasants) It was such a great evening getting to know them and see their "petting zoo"! The boys had a lot of fun playing with their kids too!
3. New brakes
The brakes on the van suddenly started squealing over the weekend, which meant having to pull it off the road so that Hunny could fix them. I am so thankful that not only does he know how to do this, but that he had time to, and that he also was teaching Bryn necessary skills as well!
Yay for new brakes and for safe driving and a Hunny that is incredibly helpful!
4. Adventure Park
The kids and I were at BCCH for a quick appointment, so I thought that maybe we could make a fun afternoon of it and go somewhere different and fun. Upon the advice of my sister in law, we ended up at the Terra Nova Adventure Park in Richmond. I'd seen pictures of this place before and was impressed. The kids were so excited! It's a nice park full of fun structures to climb on, plus two huge slides and a zip line! I'll blog about it soon!
5. Holter Monitors
Kai had to have a 24 hour Holter Monitor put on (which is why we were at BC Children's Hospital) since it had been several years since his last one. (he's only done it once, when he was about 2 years old. I'm pretty sure we stayed overnight at BCCH then as they started him on medication as well, and wanted to monitor him for possible reactions.) Everything was going great, until it stopped working at 5:30pm, for no apparent reason, just after the clinic closed. We had to travel back to the hospital the next morning, where they fitted a new one on him. I am so thankful that it wasn't too busy and they were able to fit us in immediately and get it done quickly, and without being upset or impatient with us! I'm also thankful that the kids were in good spirits and polite and the short-visit-but-long-trip wasn't too bad!
We returned the Holter Monitor this afternoon. Phew! Three days of driving back and forth to Vancouver is tiring! I am thankful for safety in driving and no traffic problems. I am also thankful that Kai didn't have any heart issues or symptoms to note of. We have his follow up appointment in two weeks, along with his annual ECHO and Ekg.
6. Skills
I am so proud of Rhys for being able to climb up the three stories on the rope ladder to get to the top of the slide. He's not afraid of heights apparently, which is great since a few of us are in this family! He's also getting better at climbing; I'm so pleased! He's always been delayed with his gross motor skills, so learning to climb and on ropes is something that has taken some time to learn! How wonderful to see him go up several times, even at his own speed!
7. lab work finally done!
Rhys had some blood tests done in February that the Genetics dept requested (remember when we let the kids skip school?) but they called us in June to say that one of the tests was done wrong! You've got to be kidding! They mailed us more requisition forms (with better instructions) and so when we were at BCCH this week, I got the proper blood work done. I am so thankful that we could do it there, since he freaks out and screams and cries. They are so good at dealing with kids! (go figure! I am also thankful that it is finally finished. Hopefully it won't take too long to hear results and get us back in for an appointment.
8. Painting Talent
Aunty Jenn (my SIL) took an evening painting class and has been slowly teaching the cuzzies how to paint as well! First she had Abi over and then Rhys later in the week, and will get to the others at a later date (if they are interested) With the work they are coming home with, I'd say that she is a good teacher! And my kids are talented!
9. visits to my parents
The kids and I took a trip to Chilliwack to visit my parents since it felt like it had been a while! I love that, even though they aren't living near us (it's an hour drive on the freeway) they are still very much a part of our lives!
10. true forgiveness
"God bases his forgiveness on himself and his forgiving character, not on the quality of your confession" Edward Welch (Heart of the Matter)
So thankful for this wisdom and truth.
So that's my week in a nutshell. How about you? What are you thankful for?
Tuesday, February 24, 2015
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!
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!
Tuesday, November 11, 2014
Kai had to go in for his annual Cardiology check up again, which we have been doing for eight years now, traveling in to BC Children's Hospital and seeing Dr Hosking (great doctor). It's not a big deal. It's just one day out of the whole year, so we really don't have anything to complain about. But the drive is a frustrating one; it sometimes makes me nervous, and it does take up our whole day between the driving and waiting for our appointment to come up, so Hunny has to take time off of work to get the kids from school typically. Sometimes it isn't very convenient.
This year, we were called and told that our appointment was booked at the Surrey Memorial Hospital. They have a temporary lab set up that is open once a week for those on this side of the River, which is such a wonderful option. But it also felt so strange. We were going to a different hospital, and seeing a different doctor. It felt odd.
Despite the differences, there was much to be thankful for. Such as, no line ups! At BCCH, even if you have a scheduled appointment, you need to be prepared to wait for your name to be called for the tests, and then you wait even longer for the doctor. At SMH, there was hardly any wait at all! There was one child ahead of us, and we only waited for maybe five minutes before we got in. In fact, it was so empty in that buiding it felt very eerie. You often wondered if you were in the right place, there just wasn't that many bodies walking around and doing busy things! But that also meant that our appointment went by fast.
Kai still gets the giggles during the exams! The stickers for the EKG lines tickle him and make him squirm. Thankfully the test really only takes 2 minutes, it's the setting up that takes longer; sitting still isn't easy for him!
The Echocardiogram wasn't too bad either, but he squirms because of all of "the goo" they use to get the pictures. He really is a funny boy!
We saw a different cardiologist, after a student doctor checked him out first, but I'm not too sure how I felt about him. I guess he was good for a quick check up doctor, but I was hoping for more information. Instead, he told me that Kai's heart was "normal" and that we could wait another year for our next appointment. Which is great news, but also strange. Normal? How normal? Normal for Kai, I guess. So not worse, then? His medication stays the same. Before we go back next year, he wants us to do a lot of repeat tests that we did at the beginning, since it's been eight years. Like his 24 Hour Holter, which he did at 18 months old while we stayed overnight at BCCH and got his medications sorted out. The doctor would also like to do an exercise test, since Kai doesn't have much stamina for running and such.
I had a few concerns when we arrived, one being his tiring out easier than others. The other was that he is always so cold, often doubling up his socks and he won't wear short-sleeved shirts. I was worried it was heart related, but that doesn't seem to be the case, which is a huge relief for me to hear! I dread the day we hear that his heart is getting worse and that he is in Congestive Heart Failure and needs surgery. But maybe it's his asthma that holds him back, and maybe he does have a thyroid issue, which is in the family. Hopefully it's just those things. Although having a dysfunctional thyroid would really suck (I would know), it seems better than having heart failure. After our appointment, we went over to the lab for some blood work. Our family doctor had written out a req to do a complete blood count and a TSH check in the summer, and Kai had managed to avoid getting this done, but I finally put my foot down and gave him no choice. (he shrieked and put up a huge fuss at the lab, I am sure the whole building heard him! oh my!) So we'll see what the results are.
Things look okay for his Dialated Cardiomyopathy, and we are clear for another year (unless symptoms pop up) and I am thankful. I just wish that the doctor could've been more clear for me. He said that things looked good on the ECHO, but it is just a portable one for the clinic and so it isn't the most detailed, which doesn't give me a lot of confidence. But from what they saw on the not-so-detailed scan, things look "normal".
This year, we were called and told that our appointment was booked at the Surrey Memorial Hospital. They have a temporary lab set up that is open once a week for those on this side of the River, which is such a wonderful option. But it also felt so strange. We were going to a different hospital, and seeing a different doctor. It felt odd.
Despite the differences, there was much to be thankful for. Such as, no line ups! At BCCH, even if you have a scheduled appointment, you need to be prepared to wait for your name to be called for the tests, and then you wait even longer for the doctor. At SMH, there was hardly any wait at all! There was one child ahead of us, and we only waited for maybe five minutes before we got in. In fact, it was so empty in that buiding it felt very eerie. You often wondered if you were in the right place, there just wasn't that many bodies walking around and doing busy things! But that also meant that our appointment went by fast.
Kai still gets the giggles during the exams! The stickers for the EKG lines tickle him and make him squirm. Thankfully the test really only takes 2 minutes, it's the setting up that takes longer; sitting still isn't easy for him!
The Echocardiogram wasn't too bad either, but he squirms because of all of "the goo" they use to get the pictures. He really is a funny boy!
We saw a different cardiologist, after a student doctor checked him out first, but I'm not too sure how I felt about him. I guess he was good for a quick check up doctor, but I was hoping for more information. Instead, he told me that Kai's heart was "normal" and that we could wait another year for our next appointment. Which is great news, but also strange. Normal? How normal? Normal for Kai, I guess. So not worse, then? His medication stays the same. Before we go back next year, he wants us to do a lot of repeat tests that we did at the beginning, since it's been eight years. Like his 24 Hour Holter, which he did at 18 months old while we stayed overnight at BCCH and got his medications sorted out. The doctor would also like to do an exercise test, since Kai doesn't have much stamina for running and such.
I had a few concerns when we arrived, one being his tiring out easier than others. The other was that he is always so cold, often doubling up his socks and he won't wear short-sleeved shirts. I was worried it was heart related, but that doesn't seem to be the case, which is a huge relief for me to hear! I dread the day we hear that his heart is getting worse and that he is in Congestive Heart Failure and needs surgery. But maybe it's his asthma that holds him back, and maybe he does have a thyroid issue, which is in the family. Hopefully it's just those things. Although having a dysfunctional thyroid would really suck (I would know), it seems better than having heart failure. After our appointment, we went over to the lab for some blood work. Our family doctor had written out a req to do a complete blood count and a TSH check in the summer, and Kai had managed to avoid getting this done, but I finally put my foot down and gave him no choice. (he shrieked and put up a huge fuss at the lab, I am sure the whole building heard him! oh my!) So we'll see what the results are.
Things look okay for his Dialated Cardiomyopathy, and we are clear for another year (unless symptoms pop up) and I am thankful. I just wish that the doctor could've been more clear for me. He said that things looked good on the ECHO, but it is just a portable one for the clinic and so it isn't the most detailed, which doesn't give me a lot of confidence. But from what they saw on the not-so-detailed scan, things look "normal".
Friday, September 19, 2014
I just found out that September is Children's Cardiomyopathy
Awareness Month! Talk about joining the cause a bit late, but
well...oops....
Cardiomyopathy is a disease of the heart muscle, and it is what Kai was diagnosed with at the age of 18 months. He has been living a normal life despite this though, and I remain focused on that, but it is scary to me!
The Children's Cardiomyopathy Foundation says this:
Kai was diagnosed after the pediatrician noticed that he wasn't gaining weight after 9 months old. It took us months and months of numerous tests (many that we felt were unnecessary as he would only have one symptom from the list of many items the doctor wanted to look into) and visits to the dietician, but it was a random x-ray that showed us the real problem and brought us to the Children's Hospital's Cardiology department. To say that I was scared would be an understatement! I still remember when the nurse gave me pamphlets on Congestive Heart Failure soon after we started to see the cardiologist! I'm sure it was very important for me to know the signs and what to look for, but wow, what bad timing! We were given the impression by the doctors that Kai was in good hands and doing well and that he would be "just fine" with this! Pamphlets on your son's heart dying is a very scary thing to read right off the bat! If I could change one thing, it would be that. The nurses could still hand out the information, but I think they would have a good chat with you first on your child's condition and the doctor's prognosis first.
This is Dilated Cardiomyopathy: The heart muscle gets thin and the left ventricle becomes enlarged so the heart muscle is unable to squeeze properly, causing the amount of blood that is pumped into the body to be reduced.
So far, Kai has been hospitalized while they did a 24 hour Holter on him and got a medication sorted out for him (at age 2), and he has had a myocardial biopsy and heart catheterization done (which really freaked me out as well!) to determine the cause (at age 7). That came up with nothing though, so he is diagnosed as Idiopathic, although it is thought to be from Myocarditis, which is an inflation of the heart from a virus (not that I remember him being really sick as an infant)
Each year, he returns to BC Children's Hospital for an Echocardiogram and EKG testing and for a follow up visit with his cardiologist. And each year, I remind myself that he has been doing well all year and has no concerning symptoms, so there is no reason to worry about a change in his heart condition. And so far I have been proven correct and relieved.
When we first arrived at BCCH, in 2005, we were told that it wasn't very common for children as young as Kai to be diagnosed with Dilated Cardiomyopathy. It was something that older men get. And because of that, there wasn't much information out there on it. The cardiologist was working with many other doctors in other hospitals to learn more, but there wasn't the statistics to go on, or the history, which was neat, but also unnerving. It says on the Children's Cardiomypoathy site that, "Cardiomyopathy in children may also present differently from diagnosed teenagers or adult. It is considered unusual when an infant or a child is diagnosed with symptoms at such a young age. Typically, symptoms are not apparent until the late teens or adult years when most patients are diagnosed."
I don't know what the future holds for Kai. But I need to remind myself that I don't know what my health future is like either! We were told to not hold him back though, to let him run and play football! So, for now, I am trusting in his wonderful doctor and trusting that God has a better plan for Kai's life.
For more information on Cardiomyopathy check out the Children's Cardiomypathy Foundation.
Also, check out for more detailed information on Dilated Cardiomyopathy HERE.
Cardiomyopathy is a disease of the heart muscle, and it is what Kai was diagnosed with at the age of 18 months. He has been living a normal life despite this though, and I remain focused on that, but it is scary to me!
The Children's Cardiomyopathy Foundation says this:
With the pediatric population, cardiomyopathy
occurs in approximately 12 children out of every million
with about 1,000-5,000 new cases diagnosed each year. The
majority of diagnosed children are infants under the age
of 12 months with fewer cases between the ages of 1 to
12 years. When cardiomyopathy is diagnosed in children
before puberty, it is considered extremely unusual and
it may not have the same causes, manifestations or disease
progression as cardiomyopathy in adults.
There is a vast amount of literature on adult cardiomyopathy but not
all of
the information is relevant to children diagnosed with the disease.
Unfortunately,
there has been little research and focus on pediatric cardiomyopathy
over the
years. Consequently, the causes are not well understood. According to
the Pediatric
Cardiomyopathy Registry, less than 25% of all patients have an
identified cause despite rigorous, standardized evaluation. What is
known is that the underlying causes of cardiomyopathy in infants and
children may be considerably different from that diagnosed in
adolescents and
adults with similar symptoms. Pediatric cardiomyopathy is more likely
to be
due to genetic factors while lifestyle or environmental factors play a
greater
role in adult cardiomyopathy.
Kai was diagnosed after the pediatrician noticed that he wasn't gaining weight after 9 months old. It took us months and months of numerous tests (many that we felt were unnecessary as he would only have one symptom from the list of many items the doctor wanted to look into) and visits to the dietician, but it was a random x-ray that showed us the real problem and brought us to the Children's Hospital's Cardiology department. To say that I was scared would be an understatement! I still remember when the nurse gave me pamphlets on Congestive Heart Failure soon after we started to see the cardiologist! I'm sure it was very important for me to know the signs and what to look for, but wow, what bad timing! We were given the impression by the doctors that Kai was in good hands and doing well and that he would be "just fine" with this! Pamphlets on your son's heart dying is a very scary thing to read right off the bat! If I could change one thing, it would be that. The nurses could still hand out the information, but I think they would have a good chat with you first on your child's condition and the doctor's prognosis first.
This is Dilated Cardiomyopathy: The heart muscle gets thin and the left ventricle becomes enlarged so the heart muscle is unable to squeeze properly, causing the amount of blood that is pumped into the body to be reduced.
So far, Kai has been hospitalized while they did a 24 hour Holter on him and got a medication sorted out for him (at age 2), and he has had a myocardial biopsy and heart catheterization done (which really freaked me out as well!) to determine the cause (at age 7). That came up with nothing though, so he is diagnosed as Idiopathic, although it is thought to be from Myocarditis, which is an inflation of the heart from a virus (not that I remember him being really sick as an infant)
Each year, he returns to BC Children's Hospital for an Echocardiogram and EKG testing and for a follow up visit with his cardiologist. And each year, I remind myself that he has been doing well all year and has no concerning symptoms, so there is no reason to worry about a change in his heart condition. And so far I have been proven correct and relieved.
When we first arrived at BCCH, in 2005, we were told that it wasn't very common for children as young as Kai to be diagnosed with Dilated Cardiomyopathy. It was something that older men get. And because of that, there wasn't much information out there on it. The cardiologist was working with many other doctors in other hospitals to learn more, but there wasn't the statistics to go on, or the history, which was neat, but also unnerving. It says on the Children's Cardiomypoathy site that, "Cardiomyopathy in children may also present differently from diagnosed teenagers or adult. It is considered unusual when an infant or a child is diagnosed with symptoms at such a young age. Typically, symptoms are not apparent until the late teens or adult years when most patients are diagnosed."
I don't know what the future holds for Kai. But I need to remind myself that I don't know what my health future is like either! We were told to not hold him back though, to let him run and play football! So, for now, I am trusting in his wonderful doctor and trusting that God has a better plan for Kai's life.
For more information on Cardiomyopathy check out the Children's Cardiomypathy Foundation.
Also, check out for more detailed information on Dilated Cardiomyopathy HERE.
Monday, September 30, 2013
Thursday, July 25, 2013
I had a some-what funny conversation with my Dad a week or so ago. He had popped by since he was in the area and visited for half an hour. It was a nice surprise! He was mentioning that he needed to do a blood test before his doctors appointment that week. I said I had to do a test on Rhys before his appointment next week as well. My Dad wanted to know why he needed to go to the pediatrician, so I said it was because he's delayed and we wanted to know why. His response was "So what? Some kids are not as smart as others." Uhm....ok. Thanks Dad, that's great. "He can play football. They're not very smart!" *snicker* Ok, good to know!
Yeah. My Dad comes from Old School thinking.
I think it's great that he can be so accepting that my son may not be as "smart as others", but this isn't about his intellegence, it's about his being behind by a few years. (as Hunny put it.) For me it's about finding out if there is anything we can do for Rhys, and if there is, let's do it now please!
We don't live like our parents did--where handicapped children were just the "retarded sibling" who couldn't do anything and had no chance. Today we have more resources available. And I'd like to use what I can to get Rhys as caught up as possible!
I wasn't offended or hurt by my Dad's comment. I did appreciate that he was so nonchalant about the whole thing and that it wouldn't be a big deal if Rhys were special needs in the end. But it did make me shake my head. I guess it's a good thing I've got 4 other "smart" children! LOL *smile*
It's hard to explain to family and friends who just don't see it as we do. Sure, R is immature, but so what, right? Maybe they're being kind and making excuses is easier for them. But I made excuses too. It wasn't until I pulled all of his old medical notes and such earlier that I was faced with it. Rhys was at a 30-36ms range when he was 40ms old, according to a Gessel Developmental Stage quiz. (that's 2 1/2-3yrs when he was 3 1/2) I kept saying what everyone else said, "he'll get it one day", or "he has older siblings who help him", and "he's a boy!" But finally I had to stop and realize that he HADN'T caught up. And I don't know if he will or not. He may always be immature, but then finally "get it". I don't know. But as a parent, I need to know what are the expectations. When he screeches at me and wails "nooooo!" at every answer he doesn't want to hear or seem to understand, is this something that I need to correct or is it something that comes with his undiagnosed issue?
In May, Dr T added another label to Rhys' chart. She didn't tell me, of course. I just saw that it was written on the requisition for bloodwork. She wrote that he was FTT (failure to thrive. ugh I hate that title) and GDD. That one made me stop. I had been looking at Global Developmental Delay for some time, but I had always shrugged it off that I didn't think he was. He could do more than what was listed, I was sure! But then I found this list on Kids Growth, and my heart hurt.
But since she didn't mention this to me at all, I don't know what to do. What does it mean? What should I be doing? ARGH!
********
This week we had our monthly visit with Dr T, except that it wasn't her, it was her locum; she's off having her 3rd child. This doctor came from the Children's hospital and had an agreeable disposition which I liked and trusted. I don't know if I'll see him again though, since he gave us a month off for our next appointment! We don't go back until September! Woohoo! (see, I told you they are running out of things to do for him!) The doctor wants me to contact the Centre for Child Development again to make sure we are on the wait list for preschool, just to keep our name out there and to confirm with them that he is attending preschool and not kindergarten. But I feel torn about this. See, as much as it would maybe be good to be at the Centre, it just does not fit in with scheduling. The Olders attend school in Langley, and the Centre is in the complete opposite direction in Surrey. There is no possible way I could make it for the morning class, or make it to pick up the Olders from school on time if R were in the afternoon class. Which is why we decided to go with the preschool that is at the school the Olders attend. But I struggled with the thoughts that if we truly were interested in Rhys' best, we'd make it work for him to go to the preschool at the Centre (if we were to get a spot, that is)...oh the Mommy Guilt!
At first, Dr N wanted me to contact the Speech Therapist about getting him back in for a consult. They saw him last in December and said that he was doing fine and that we could take the winter off. They'd contact us again in March. Except they didn't, and I didn't call them either since we were busy with Dr T and he was speaking so much better. (and, frankly I was annoyed with them!) But now he is five and I don't know if he's "graduated" from their program or not, or could he go back since technically he isn't registered at any school for the Fall? (you leave Speech once you start school, so you either graduate and are now at par with your peers, or you seek private ST, which is what we had to do for Kai.) They should've contacted us again since he was turning five and starting kindergarten age, as they like to work hardest on the older kids in the spring. But I'm sure if I call them, they'll make it out to be me who should've called them. *sigh* So I wasn't looking forward to that. But then Dr N decided to not have me call the ST, but to call the Centre. I'm trying to decide which one I'd rather do!
Regarding his stool test, everything is normal. Yay. Not too sure what that means regarding his elevated IgE, but I'm not going to worry about it. So far everything is coming back normal. Which is great in that he's not unhealthy, but it's sad in that we don't have anything else to go on.
*********
In other good news, I FINALLY got a hold of Kai's cardiology reception! I had only been trying to contact them since the end of May! I had left so many messages on their machine; I was starting to get rather ticked off! I had our doctor fax in our referral to see the cardiologist (and I know that would've been done that afternoon, as her receptionist, Theresa, is good!) and so I was just waiting for a date for our appointment. Except, things got even more frustrating.
Kai needed refills on his prescriptions. (he's taking Ramipril and Carvedilol currently) but when I called our pharmacy, his one medication had expired! Oh great! So I added that to my message on the cardiologist machine! Two days later. the pharmacist called me to say that they couldn't refill it because our cardiologist was on holidays, and oh, it was time for Kai to go back in for his annual checkup! I admit that I was a *bit* annoyed at the pharmacist for informing me of that, as if it were my fault he hadn't been in and that his prescription expired! I let her know, somewhat tersely, that I was aware and I had been trying to call since May and hadn't heard back from the doctor's office despite all my messages! The pharmacist's response was that maybe I needed to go in to the walk-in clinic for a prescription renewal. *sigh*
I did get him an appointment with our regular doctor instead of having to go see someone at a clinic and needing to go over all the little details, ugh! But then two days after that, the pharmacist called me to let me know that one of the cardiologist's associates approved our medication, yay! Oh! And that afternoon, I finally got a hold of the receptionist! And I was nice and polite and didn't tell her how frustrated I was at her never calling me back! Instead I let her book the appointment for next month (when Dr H is back) in her cheery voice! So at least that is done!!!
Yeah. My Dad comes from Old School thinking.
I think it's great that he can be so accepting that my son may not be as "smart as others", but this isn't about his intellegence, it's about his being behind by a few years. (as Hunny put it.) For me it's about finding out if there is anything we can do for Rhys, and if there is, let's do it now please!
We don't live like our parents did--where handicapped children were just the "retarded sibling" who couldn't do anything and had no chance. Today we have more resources available. And I'd like to use what I can to get Rhys as caught up as possible!
I wasn't offended or hurt by my Dad's comment. I did appreciate that he was so nonchalant about the whole thing and that it wouldn't be a big deal if Rhys were special needs in the end. But it did make me shake my head. I guess it's a good thing I've got 4 other "smart" children! LOL *smile*
It's hard to explain to family and friends who just don't see it as we do. Sure, R is immature, but so what, right? Maybe they're being kind and making excuses is easier for them. But I made excuses too. It wasn't until I pulled all of his old medical notes and such earlier that I was faced with it. Rhys was at a 30-36ms range when he was 40ms old, according to a Gessel Developmental Stage quiz. (that's 2 1/2-3yrs when he was 3 1/2) I kept saying what everyone else said, "he'll get it one day", or "he has older siblings who help him", and "he's a boy!" But finally I had to stop and realize that he HADN'T caught up. And I don't know if he will or not. He may always be immature, but then finally "get it". I don't know. But as a parent, I need to know what are the expectations. When he screeches at me and wails "nooooo!" at every answer he doesn't want to hear or seem to understand, is this something that I need to correct or is it something that comes with his undiagnosed issue?
In May, Dr T added another label to Rhys' chart. She didn't tell me, of course. I just saw that it was written on the requisition for bloodwork. She wrote that he was FTT (failure to thrive. ugh I hate that title) and GDD. That one made me stop. I had been looking at Global Developmental Delay for some time, but I had always shrugged it off that I didn't think he was. He could do more than what was listed, I was sure! But then I found this list on Kids Growth, and my heart hurt.
A Global Developmental Delay is a general term used to describe a condition
that occurs during the developmental period of a child's life (birth to age
18).
Common signs may include:
- delayed acquisition of milestones: the child is late in sitting up, crawling, walking
- limited reasoning or conceptual abilities
- fine/gross motor difficulties
- poor social skills/judgment
- aggressive behaviour as a coping skill
- communication problems
But since she didn't mention this to me at all, I don't know what to do. What does it mean? What should I be doing? ARGH!
********
This week we had our monthly visit with Dr T, except that it wasn't her, it was her locum; she's off having her 3rd child. This doctor came from the Children's hospital and had an agreeable disposition which I liked and trusted. I don't know if I'll see him again though, since he gave us a month off for our next appointment! We don't go back until September! Woohoo! (see, I told you they are running out of things to do for him!) The doctor wants me to contact the Centre for Child Development again to make sure we are on the wait list for preschool, just to keep our name out there and to confirm with them that he is attending preschool and not kindergarten. But I feel torn about this. See, as much as it would maybe be good to be at the Centre, it just does not fit in with scheduling. The Olders attend school in Langley, and the Centre is in the complete opposite direction in Surrey. There is no possible way I could make it for the morning class, or make it to pick up the Olders from school on time if R were in the afternoon class. Which is why we decided to go with the preschool that is at the school the Olders attend. But I struggled with the thoughts that if we truly were interested in Rhys' best, we'd make it work for him to go to the preschool at the Centre (if we were to get a spot, that is)...oh the Mommy Guilt!
At first, Dr N wanted me to contact the Speech Therapist about getting him back in for a consult. They saw him last in December and said that he was doing fine and that we could take the winter off. They'd contact us again in March. Except they didn't, and I didn't call them either since we were busy with Dr T and he was speaking so much better. (and, frankly I was annoyed with them!) But now he is five and I don't know if he's "graduated" from their program or not, or could he go back since technically he isn't registered at any school for the Fall? (you leave Speech once you start school, so you either graduate and are now at par with your peers, or you seek private ST, which is what we had to do for Kai.) They should've contacted us again since he was turning five and starting kindergarten age, as they like to work hardest on the older kids in the spring. But I'm sure if I call them, they'll make it out to be me who should've called them. *sigh* So I wasn't looking forward to that. But then Dr N decided to not have me call the ST, but to call the Centre. I'm trying to decide which one I'd rather do!
Regarding his stool test, everything is normal. Yay. Not too sure what that means regarding his elevated IgE, but I'm not going to worry about it. So far everything is coming back normal. Which is great in that he's not unhealthy, but it's sad in that we don't have anything else to go on.
*********
In other good news, I FINALLY got a hold of Kai's cardiology reception! I had only been trying to contact them since the end of May! I had left so many messages on their machine; I was starting to get rather ticked off! I had our doctor fax in our referral to see the cardiologist (and I know that would've been done that afternoon, as her receptionist, Theresa, is good!) and so I was just waiting for a date for our appointment. Except, things got even more frustrating.
Kai needed refills on his prescriptions. (he's taking Ramipril and Carvedilol currently) but when I called our pharmacy, his one medication had expired! Oh great! So I added that to my message on the cardiologist machine! Two days later. the pharmacist called me to say that they couldn't refill it because our cardiologist was on holidays, and oh, it was time for Kai to go back in for his annual checkup! I admit that I was a *bit* annoyed at the pharmacist for informing me of that, as if it were my fault he hadn't been in and that his prescription expired! I let her know, somewhat tersely, that I was aware and I had been trying to call since May and hadn't heard back from the doctor's office despite all my messages! The pharmacist's response was that maybe I needed to go in to the walk-in clinic for a prescription renewal. *sigh*
I did get him an appointment with our regular doctor instead of having to go see someone at a clinic and needing to go over all the little details, ugh! But then two days after that, the pharmacist called me to let me know that one of the cardiologist's associates approved our medication, yay! Oh! And that afternoon, I finally got a hold of the receptionist! And I was nice and polite and didn't tell her how frustrated I was at her never calling me back! Instead I let her book the appointment for next month (when Dr H is back) in her cheery voice! So at least that is done!!!
Thursday, May 30, 2013
This afternoon, I had to call Kai's cardiologist to make an appointment for his annual heart checkup. I have been meaning to do this all month and now this month is almost all used up! The appointment isn't a huge deal, as it is just the usual: an ECG and an echocardiogram. The doctor will come see us and tell us there isn't much change (at least, I hope so!) and that he may keep his medicine doses the same or he may decide to do another test on him for more information, but so far nothing has given us much at all. His official diagnosis still stands as Left Ventricle Asymptomatic Cardiomyopathy. We don't know when he got it or even how, but the doctor thinks it's likely from a virus he has as a baby and that we didn't even notice. (how can a virus so unnoticeable to anyone outwardly be so damaging inwardly? how could we not see he was ill? I'll never understand.) But this happened early in his first year, for he stopped gaining weight at 9 months old and the doctor did test after test after test and it was so stressful and so frustrating. Finally a random chest x-ray showed his enlarged heart at 15 months old.
When I called, what was supposed to be the direct line to Dr H's receptionist at BCCH was a general desk I don't even know where, and the receptionist had to transfer my call, since things had changed. That threw me off; I'd have to remember to ask what the new direct line number was. Then I realized she said a different name other than Theresa. Oh no! Is Theresa gone? For just the day or for always? I liked her!
The receptionist I talked to was definitely not Theresa! When I told her that I needed to book an appointment for my son, she informed me that I needed to have a doctor's referral first. Excuse me? A referral? I let her know that my son had been seeing Dr H for 5 to 7 years now (in fact it's been 8 years already). Her short response was, "I know. You still need a referral." What? Why? She went to pull Kai's chart and I was sitting on the other end of the line, fuming and feeling confused. So many things came out of my mouth that I wanted to say, but knew I wouldn't because I'm polite and wouldn't likely get the chance. I also knew I should try not to rude right back to her, even though I didn't like her attitude or tone. When she returned, she said she wasn't too sure which tests Dr H would want to do, but most likely just the echo and ECG, but she'd have to ask him. I still had to go get a referral from my family doctor first though. I'm still insisting that we've been seeing this doctor since Kai was a baby, and I've made appointments every year and I've NEVER had to go get a referral. She disagreed with me, which irked me even more. I ask her how long it's been this way and when did it change? She tells me it's always been this way; I've always needed a referral. WTH? I hang up with her, thoroughly confused and agitated. I know my memory is not the best at times, but I know that I have never had to go see my doctor for a referral to see the specialist that we've seen for so long. ...or have I and I just don't remember because it's been a year?
When I call up my family doctor and get connected to her receptionist (another Theresa, whom I love) and tell her of my confusion, she tells me that, yes, it's always been this way! That somehow a referral was always needed and faxed over.
What is she talking about???
So either my memory is so shot...or she's implying that Dr H's Theresa used to contact my family dr for a referral for me and have them fax it over so we can get in for our annual check up! (without me knowing) I do recall that you DO need a referral to see a specialist if your last appointment had been longer than 6 months apart, (because I remember having to get another one for me to see my rheumetologist years ago) but still, it hadn't occurred to me that this fell under the same rules. It makes sense that it would, I guess. But I am bewildered. I do not ever recall needing to go get a silly referral.
It irks me to think that I would have to pull Kai from school for a few hours, take him to White Rock so the doctor can look at him, just so we can have a referral form faxed for us. I am hoping that the doctor will not see a need to have us come in and will just do that instead. As it is, his cardiology appointment will take him a day out of school as it is just to go all the way to Vancouver, to the Children's Hospital, for his tests. (I could wait until he's out of school if I'm so worried he'll miss something *snarf* but then I'd have to take all of the kids with me too, and that would be super stressful. No thanks.) I'm annoyed that something so simple, something that I've been meaning to do for a while now, has been stretched out and made difficult. It makes me feel frustrated and slightly embarrassed that this piece of info slipped past me...and I got upset with the receptionist over it. Of course she was right! ...but it just didn't sound or feel right. :/
When I called, what was supposed to be the direct line to Dr H's receptionist at BCCH was a general desk I don't even know where, and the receptionist had to transfer my call, since things had changed. That threw me off; I'd have to remember to ask what the new direct line number was. Then I realized she said a different name other than Theresa. Oh no! Is Theresa gone? For just the day or for always? I liked her!
The receptionist I talked to was definitely not Theresa! When I told her that I needed to book an appointment for my son, she informed me that I needed to have a doctor's referral first. Excuse me? A referral? I let her know that my son had been seeing Dr H for 5 to 7 years now (in fact it's been 8 years already). Her short response was, "I know. You still need a referral." What? Why? She went to pull Kai's chart and I was sitting on the other end of the line, fuming and feeling confused. So many things came out of my mouth that I wanted to say, but knew I wouldn't because I'm polite and wouldn't likely get the chance. I also knew I should try not to rude right back to her, even though I didn't like her attitude or tone. When she returned, she said she wasn't too sure which tests Dr H would want to do, but most likely just the echo and ECG, but she'd have to ask him. I still had to go get a referral from my family doctor first though. I'm still insisting that we've been seeing this doctor since Kai was a baby, and I've made appointments every year and I've NEVER had to go get a referral. She disagreed with me, which irked me even more. I ask her how long it's been this way and when did it change? She tells me it's always been this way; I've always needed a referral. WTH? I hang up with her, thoroughly confused and agitated. I know my memory is not the best at times, but I know that I have never had to go see my doctor for a referral to see the specialist that we've seen for so long. ...or have I and I just don't remember because it's been a year?
When I call up my family doctor and get connected to her receptionist (another Theresa, whom I love) and tell her of my confusion, she tells me that, yes, it's always been this way! That somehow a referral was always needed and faxed over.
What is she talking about???
So either my memory is so shot...or she's implying that Dr H's Theresa used to contact my family dr for a referral for me and have them fax it over so we can get in for our annual check up! (without me knowing) I do recall that you DO need a referral to see a specialist if your last appointment had been longer than 6 months apart, (because I remember having to get another one for me to see my rheumetologist years ago) but still, it hadn't occurred to me that this fell under the same rules. It makes sense that it would, I guess. But I am bewildered. I do not ever recall needing to go get a silly referral.
It irks me to think that I would have to pull Kai from school for a few hours, take him to White Rock so the doctor can look at him, just so we can have a referral form faxed for us. I am hoping that the doctor will not see a need to have us come in and will just do that instead. As it is, his cardiology appointment will take him a day out of school as it is just to go all the way to Vancouver, to the Children's Hospital, for his tests. (I could wait until he's out of school if I'm so worried he'll miss something *snarf* but then I'd have to take all of the kids with me too, and that would be super stressful. No thanks.) I'm annoyed that something so simple, something that I've been meaning to do for a while now, has been stretched out and made difficult. It makes me feel frustrated and slightly embarrassed that this piece of info slipped past me...and I got upset with the receptionist over it. Of course she was right! ...but it just didn't sound or feel right. :/
Thursday, April 28, 2011
Back in November, Kai's Cardiologist made a comment about doing an MRI "in the future" just for some more information on his heart. He'd already had a heart catheterization in 2008, which gave no indication to the cause for his cardiomyopathy and nothing further for Dr H to go on, so that was disappointing. I just wasn't expecting it to come up sooner rather than more future-thinking.
Kai was scheduled for his MRI at the end of March. Now that he's older, he tends to understand more and I need to explain procedures better. I can't just say he's seeing the doctor and leave it at that anymore! So I tried to let him know that it was a rather simple test, it wouldn't hurt, he wouldn't even be touched by anything, he was just going to be put to sleep for it. I think that caused him concern though, because he kept asking about that. Why would he be sleeping? How would they put him to sleep? Would he wake up during the testing? Questions like that. Both Hunny and I have had MRI's (for his knee and my back pain years ago) so we told him how they worked like a more detailed X-ray machine, except you were in a box for a long time and couldn't move. (Sleeping through it would've been a great option for me!)
The day before his procedure, I had to take Kai in for a meeting with the anesthesiologist. He was excited to be missing school and I was feeling anxious! I remembered his surgery over two years ago and how I almost passed out as they put him to sleep! I was keenly aware it could happen again, and felt nervous about the day of his exam. I didn't expect I'd react upon meeting the anesthesiologists! They came in, we shook hands, they talked about the procedure, and I started to feel hot to the point where I could feel sweat beading on my forehead! I don't recall hearing much of what they said, as I wanted to pass out, but I remember leaving with the feeling it would be just a routine MRI: put him in the machine, take a few pictures and scans and we'd be home in a few hours.
The next morning was an early one for us, and not knowing how traffic would be on a drive into Vancouver at 6am, we left extra time for us to arrive. So, of course, we got there a good hour early! Thankfully they left us in and got us set up. The nurses told me that the whole thing would be a good 1/2 hour, then we'd be in recovery for an hour and go home. Routine. First, he had to have an X-Ray though. (not too sure why....preggo brain and all!)
I went in with Kai to see the anesthesiologists, and to keep him distracted while they put an IV into his hand. He'd already been wearing a numbing gel on them for an hour, so he really wouldn't have felt it, but neither him nor I were expecting it. I told him they'd just give him a mask to help him sleep, like they did with his catheterization. So when he noticed, he started to cry, and I started to feel woozy. How embarrassing. He's crying about it hurting and the blood is draining from my face and pooling in my ears and I'm having trouble hearing. (I've discovered the closer I am to passing out, the less I can actually hear of anything! Voices and noises sound so far away.This is quite common I guess!) I was trying to comfort him, but I had to sit down!
And that's how it all began.
I found out it wasn't so "routine" after all. I was told that they were putting him to sleep (which literally took 3 seconds after they put whatever-it-was in his IV) not to keep him still or comfortable, but because they needed to speed up his heart and slow it down for different tests, as well as getting him to hold his breath. I wondered how they'd do that, but the anesthesiologist cryptically said they "had their ways", and I'm sure that I likely didn't really want to know. According to the info sheet I was given, the MRI would be 1 1/2 hours, so already I had two different times of length.
I sat in the waiting room, had an hour nap (sortof, what I could manage in a chair in a waiting room full of other parents), wandered over to Starbucks for a snack, tried to access FB and my BBM (there was bad reception so that didn't go over well), thumbed through a few magazines and made some acquaintances. Three hours pass and I'm starting to wonder if I should be concerned. I was just about to ask at the nurses station when I was called to see Kai in the recovery room. (Usually a doctor comes to see you prior to that to let you know how it all went, so I was confused. I never did talk to anyone about the MRI, other than to hear that Kai's blood pressure dipped at the end. Not hearing anything bothered me, but hopefully I'll learn more from our own doctor.) Apparently this was a special cardiac MRI.
After a few popsicles and insisting they hadn't taken him in yet, and telling all the nurses that he missed breakfast AND lunch, Kai was allowed to go home! He was sleepy and chatty and cute and spent the rest of the day on the couch. Not that I could keep him still or resting, of course!
Now we wait. I don't know how long it takes for doctor's to get MRI results or when we'll hear from Dr H for another appointment, but it's been a month. I hope we get some answers this time. But even if we don't, I'm happy with how well Kai's been with his condition. Considering there isn't much info out there on a child with this type of cardiomyopathy, he's doing really good.
Kai was scheduled for his MRI at the end of March. Now that he's older, he tends to understand more and I need to explain procedures better. I can't just say he's seeing the doctor and leave it at that anymore! So I tried to let him know that it was a rather simple test, it wouldn't hurt, he wouldn't even be touched by anything, he was just going to be put to sleep for it. I think that caused him concern though, because he kept asking about that. Why would he be sleeping? How would they put him to sleep? Would he wake up during the testing? Questions like that. Both Hunny and I have had MRI's (for his knee and my back pain years ago) so we told him how they worked like a more detailed X-ray machine, except you were in a box for a long time and couldn't move. (Sleeping through it would've been a great option for me!)
The day before his procedure, I had to take Kai in for a meeting with the anesthesiologist. He was excited to be missing school and I was feeling anxious! I remembered his surgery over two years ago and how I almost passed out as they put him to sleep! I was keenly aware it could happen again, and felt nervous about the day of his exam. I didn't expect I'd react upon meeting the anesthesiologists! They came in, we shook hands, they talked about the procedure, and I started to feel hot to the point where I could feel sweat beading on my forehead! I don't recall hearing much of what they said, as I wanted to pass out, but I remember leaving with the feeling it would be just a routine MRI: put him in the machine, take a few pictures and scans and we'd be home in a few hours.
The next morning was an early one for us, and not knowing how traffic would be on a drive into Vancouver at 6am, we left extra time for us to arrive. So, of course, we got there a good hour early! Thankfully they left us in and got us set up. The nurses told me that the whole thing would be a good 1/2 hour, then we'd be in recovery for an hour and go home. Routine. First, he had to have an X-Ray though. (not too sure why....preggo brain and all!)
I went in with Kai to see the anesthesiologists, and to keep him distracted while they put an IV into his hand. He'd already been wearing a numbing gel on them for an hour, so he really wouldn't have felt it, but neither him nor I were expecting it. I told him they'd just give him a mask to help him sleep, like they did with his catheterization. So when he noticed, he started to cry, and I started to feel woozy. How embarrassing. He's crying about it hurting and the blood is draining from my face and pooling in my ears and I'm having trouble hearing. (I've discovered the closer I am to passing out, the less I can actually hear of anything! Voices and noises sound so far away.This is quite common I guess!) I was trying to comfort him, but I had to sit down!
And that's how it all began.
I found out it wasn't so "routine" after all. I was told that they were putting him to sleep (which literally took 3 seconds after they put whatever-it-was in his IV) not to keep him still or comfortable, but because they needed to speed up his heart and slow it down for different tests, as well as getting him to hold his breath. I wondered how they'd do that, but the anesthesiologist cryptically said they "had their ways", and I'm sure that I likely didn't really want to know. According to the info sheet I was given, the MRI would be 1 1/2 hours, so already I had two different times of length.
I sat in the waiting room, had an hour nap (sortof, what I could manage in a chair in a waiting room full of other parents), wandered over to Starbucks for a snack, tried to access FB and my BBM (there was bad reception so that didn't go over well), thumbed through a few magazines and made some acquaintances. Three hours pass and I'm starting to wonder if I should be concerned. I was just about to ask at the nurses station when I was called to see Kai in the recovery room. (Usually a doctor comes to see you prior to that to let you know how it all went, so I was confused. I never did talk to anyone about the MRI, other than to hear that Kai's blood pressure dipped at the end. Not hearing anything bothered me, but hopefully I'll learn more from our own doctor.) Apparently this was a special cardiac MRI.
After a few popsicles and insisting they hadn't taken him in yet, and telling all the nurses that he missed breakfast AND lunch, Kai was allowed to go home! He was sleepy and chatty and cute and spent the rest of the day on the couch. Not that I could keep him still or resting, of course!
Now we wait. I don't know how long it takes for doctor's to get MRI results or when we'll hear from Dr H for another appointment, but it's been a month. I hope we get some answers this time. But even if we don't, I'm happy with how well Kai's been with his condition. Considering there isn't much info out there on a child with this type of cardiomyopathy, he's doing really good.
Monday, May 25, 2009
Kai keeps getting bigger! He keeps growing on me and it's exciting…and bittersweet. He's outgrowing his clothes, so I'll have to update his wardrobe soon. (I'm trying to hold off though, since it'll be summer and the clothes of choice will be shorts anyways!) He's getting taller, too. But not just in his physical appearance, he's getting OLDER. His personality is starting to blossom. He is such a delight!
Just a year ago at this time, he was struggling with his speech, having trouble with respect, refusing to potty train, and generally being difficult. *sigh* It was tough!
But now….
He has just grown so much. The other day, I spied him helping out a little sister of one of his friends. She wanted to know where her brother was (she's around 2 years old), so he put his arm around her shoulders and walked her over to him! Later, I see him with her on the playground, his hand in hers, as he takes her over to the slides. How gentle and sweet! It was so nice, and quite the surprise to see! Kai can seem to be such a "bully" at times (he pushes his brother, he takes toys from his sister, growls when he doesn't get his way…) that I worry that he's respectful and nice and caring to others. What a relief!
Last week, we got three pieces of Good News about him. The first one came from his Kindergarten teacher: lately, she has been preparing the class that after this school year ends, then comes summer, then they will return and go to Grade One!!! Kai is so excited! He keeps asking if school is over yet! His teacher confirmed for us that yes, Kai is indeed ready for Grade one!!! How wonderful! I had a feeling, but it was much nicer to have someone agree with us who matters more than just a parent's hope!
The second piece of good news comes from his Cardiologist, Dr. Hosking. (I love that man!) We had another apointment with him, with his usual Echocardiogram and ECG tests. He was weighed at 15.1kg (33.5 lbs) and measured at 105cm (3' 5.5") So he's gained a kilogram in half a year! Yay! (he's still so small, LOL!) The doctor told us that according to the Biopsy (catheterization surgery in April 2008) we have no new info, but there is some type of scar tissue on his heart. Or rather, it's a type of tissue that is formed before scar tissue is made. (there is obviously a term for it, but I forgot to write it down) There are three different ways this could've come about, the first one we were able to cross of immediately, the second reason is from an inflamation that occurred in the heart muscle that had healed itself, and the third is one that is still "iffy". Hosking is convinced it's from an acute event that caused Kai's heart to enlarge, one that wasn't big enough to warrent hospitalization, so much so that we may not have realized it happened, but effected his heart, which is why it reacted the way it did.
What he sees from the tests are that there is no change in the heart muscle. The numbers are identical to what they were in September when we saw him last! That is EXCELLENT news!!! There is no active inflamation, his enzymes are normal, the pressure in his lungs are normal. Everything is looking the same. So while Kai's heart hasn't gotten smaller, it hasn't gotten bigger either! Dr. Hosking is wondering if maybe Kai's heart, the pump, and squeeze and all those other terms he likes to use that go over my head, are just the way his heart is. The medications don't seem to be doing anything to the condition, and if that is the case, then why do we continue with them? So he is going to do it the "coward's way" (his term!) and instead of weaning Kai off his three medications, he is going to keep him at the same doseages and let him outgrow them. Seems ok to me. The Best news was when he told us that he doesn't need to see Kai for another YEAR!!! To me, that spoke of confidence, and it made me feel so good.
I am so happy that his heart is doing "Well." This is such a relief for me! As I mentioned before, my biggest worry was that Kai would collapse one day during gym class, and so I asked the doctor about that, to which he said that while we can't say he will never go into Heart Failure (a terribly scary word), things are looking well. That lifted my heart as well. I guess my worry is that something could happen to him suddenly, that he would or could die in an instant. My fears are silly because I know that the children that do pass suddenly like that, the parents were unaware of any exisiting heart conditions, whereas we are prepared for that in Kai. And it likely won't happen out of the blue either. Or one could hope. *biting lip* It's hard not to worry for your child's health. You want them to live forever, to grow, to change, to live life. You don't want to see them suffer, to grow frail, to struggle, or to die prematurely.
But what does it mean to "die before their time"? or "prematurely", really? If you think about it, the statement doesn't make a lot of sense. After all, the Lord God is the author of life. He created life, He breathed life into everything, He forsees and sustains life. He calls us Home when it is Right and Of Time. Not before. Everything is done perfectly in His time. So when we say that someone died before Their Time, that isn't possible. God knows the numbers of days we will spend on earth, therefore if our numbers are a lot shorter than we'd like this side of heaven, it is Good. But oh so hard.
*sigh* "Oh death, where is your victory? Oh death, where is your sting?…. But thank God! He gives us victory over sin and death through our Lord Jesus Christ!" i Cor 15:55 & 57
The Third thing that was Good News for Kai was from his Speech Pathologist, Dara. Last week, she stated that he is doing so well that we only need to come every OTHER week now! Woohoo!!! He is speaking well and trying harder. His teacher even said that one day, he was trying real hard to speak slower and articulate better. How wonderful! He loves going to speech, which is such a good thing to see! He even sees the TA in his classroom for some speech-related games, which he really enjoys too. (nice to know that he's not old enough to find it embarrassing yet! I remember having to get extra help for some subjects in grade 5. It just further made me feel like a weirdo. I knew I needed the help, but it didn't help socially, which I was already having troubles with. *sigh* such memories) She still finds it so Off The Mark that he would have Apraxia. She says he's just a bit delayed, and she is so confident that we won't need to see her this summer at all! Woo-ee!!!
(Anna tried to get a picture of Kai when she was over last weekend. The kids confiscated my camera…I didn't mind…until I found it broken. grr!!!! the buttons don't click to stay on or off. oh well, now I definitely need a new one!!!)
Kai has already decided that when he gets older, he is going to become a Police Officer. He wants to ride a motorcycle (or as Bryn calls them "sigh-coh sigh-cohs"!) and even fly a police helicopter! Very adventureous! We'll see if this dream continues as he grows!
He also announced one day to Anna that, "when I grow up I'm going to be a police officer and I'm going to marry you!" LOL! How absolutely adorable!!! Anna was horrified though! LOL If she's not interested, then there is always her little sister, Janaya, who is two years behind Kai and such a cutie!
(Anna riding on Kai's bike while he stands behind her on the training wheels!)
Kai is so wonderful! I love him dearly! He's getting So Big!!! A part of me isn't ready for it. I'm so unprepared. He's been so YOUNG for so long…so dependant with his speech and his attitude and confidence, but now he's growing. He's getting independant and brave. (he'll actually talk to strangers now!!!! …which is a good/bad thing! it's definitely better than ignoring or growling at them!!!) But I've lived with this for so long, it's hard to imagine it all fading away into the past. I'm not prepared! But I am happy. Relieved. At peace.
Just a year ago at this time, he was struggling with his speech, having trouble with respect, refusing to potty train, and generally being difficult. *sigh* It was tough!
But now….
He has just grown so much. The other day, I spied him helping out a little sister of one of his friends. She wanted to know where her brother was (she's around 2 years old), so he put his arm around her shoulders and walked her over to him! Later, I see him with her on the playground, his hand in hers, as he takes her over to the slides. How gentle and sweet! It was so nice, and quite the surprise to see! Kai can seem to be such a "bully" at times (he pushes his brother, he takes toys from his sister, growls when he doesn't get his way…) that I worry that he's respectful and nice and caring to others. What a relief!
Last week, we got three pieces of Good News about him. The first one came from his Kindergarten teacher: lately, she has been preparing the class that after this school year ends, then comes summer, then they will return and go to Grade One!!! Kai is so excited! He keeps asking if school is over yet! His teacher confirmed for us that yes, Kai is indeed ready for Grade one!!! How wonderful! I had a feeling, but it was much nicer to have someone agree with us who matters more than just a parent's hope!
The second piece of good news comes from his Cardiologist, Dr. Hosking. (I love that man!) We had another apointment with him, with his usual Echocardiogram and ECG tests. He was weighed at 15.1kg (33.5 lbs) and measured at 105cm (3' 5.5") So he's gained a kilogram in half a year! Yay! (he's still so small, LOL!) The doctor told us that according to the Biopsy (catheterization surgery in April 2008) we have no new info, but there is some type of scar tissue on his heart. Or rather, it's a type of tissue that is formed before scar tissue is made. (there is obviously a term for it, but I forgot to write it down) There are three different ways this could've come about, the first one we were able to cross of immediately, the second reason is from an inflamation that occurred in the heart muscle that had healed itself, and the third is one that is still "iffy". Hosking is convinced it's from an acute event that caused Kai's heart to enlarge, one that wasn't big enough to warrent hospitalization, so much so that we may not have realized it happened, but effected his heart, which is why it reacted the way it did.
What he sees from the tests are that there is no change in the heart muscle. The numbers are identical to what they were in September when we saw him last! That is EXCELLENT news!!! There is no active inflamation, his enzymes are normal, the pressure in his lungs are normal. Everything is looking the same. So while Kai's heart hasn't gotten smaller, it hasn't gotten bigger either! Dr. Hosking is wondering if maybe Kai's heart, the pump, and squeeze and all those other terms he likes to use that go over my head, are just the way his heart is. The medications don't seem to be doing anything to the condition, and if that is the case, then why do we continue with them? So he is going to do it the "coward's way" (his term!) and instead of weaning Kai off his three medications, he is going to keep him at the same doseages and let him outgrow them. Seems ok to me. The Best news was when he told us that he doesn't need to see Kai for another YEAR!!! To me, that spoke of confidence, and it made me feel so good.
I am so happy that his heart is doing "Well." This is such a relief for me! As I mentioned before, my biggest worry was that Kai would collapse one day during gym class, and so I asked the doctor about that, to which he said that while we can't say he will never go into Heart Failure (a terribly scary word), things are looking well. That lifted my heart as well. I guess my worry is that something could happen to him suddenly, that he would or could die in an instant. My fears are silly because I know that the children that do pass suddenly like that, the parents were unaware of any exisiting heart conditions, whereas we are prepared for that in Kai. And it likely won't happen out of the blue either. Or one could hope. *biting lip* It's hard not to worry for your child's health. You want them to live forever, to grow, to change, to live life. You don't want to see them suffer, to grow frail, to struggle, or to die prematurely.
But what does it mean to "die before their time"? or "prematurely", really? If you think about it, the statement doesn't make a lot of sense. After all, the Lord God is the author of life. He created life, He breathed life into everything, He forsees and sustains life. He calls us Home when it is Right and Of Time. Not before. Everything is done perfectly in His time. So when we say that someone died before Their Time, that isn't possible. God knows the numbers of days we will spend on earth, therefore if our numbers are a lot shorter than we'd like this side of heaven, it is Good. But oh so hard.
*sigh* "Oh death, where is your victory? Oh death, where is your sting?…. But thank God! He gives us victory over sin and death through our Lord Jesus Christ!" i Cor 15:55 & 57
The Third thing that was Good News for Kai was from his Speech Pathologist, Dara. Last week, she stated that he is doing so well that we only need to come every OTHER week now! Woohoo!!! He is speaking well and trying harder. His teacher even said that one day, he was trying real hard to speak slower and articulate better. How wonderful! He loves going to speech, which is such a good thing to see! He even sees the TA in his classroom for some speech-related games, which he really enjoys too. (nice to know that he's not old enough to find it embarrassing yet! I remember having to get extra help for some subjects in grade 5. It just further made me feel like a weirdo. I knew I needed the help, but it didn't help socially, which I was already having troubles with. *sigh* such memories) She still finds it so Off The Mark that he would have Apraxia. She says he's just a bit delayed, and she is so confident that we won't need to see her this summer at all! Woo-ee!!!
(Anna tried to get a picture of Kai when she was over last weekend. The kids confiscated my camera…I didn't mind…until I found it broken. grr!!!! the buttons don't click to stay on or off. oh well, now I definitely need a new one!!!)
Kai has already decided that when he gets older, he is going to become a Police Officer. He wants to ride a motorcycle (or as Bryn calls them "sigh-coh sigh-cohs"!) and even fly a police helicopter! Very adventureous! We'll see if this dream continues as he grows!
He also announced one day to Anna that, "when I grow up I'm going to be a police officer and I'm going to marry you!" LOL! How absolutely adorable!!! Anna was horrified though! LOL If she's not interested, then there is always her little sister, Janaya, who is two years behind Kai and such a cutie!
(Anna riding on Kai's bike while he stands behind her on the training wheels!)
Kai is so wonderful! I love him dearly! He's getting So Big!!! A part of me isn't ready for it. I'm so unprepared. He's been so YOUNG for so long…so dependant with his speech and his attitude and confidence, but now he's growing. He's getting independant and brave. (he'll actually talk to strangers now!!!! …which is a good/bad thing! it's definitely better than ignoring or growling at them!!!) But I've lived with this for so long, it's hard to imagine it all fading away into the past. I'm not prepared! But I am happy. Relieved. At peace.
Friday, September 19, 2008
Both Rhys and Kai had their Cardio appointments at the beginning of the month. Kai's bi-annual check-up and Rhys' follow-up, so both had ECHO's and EEGs done! Kai did super! He's gotten so used to them now that he doesn't move, just watches the video…so different from when he was 2 years old and I practically had to HOLD him down for the exams! Rhys wasn't too bad, just wanted to be held and fed, so we had to be crafty with that, especially with his Reflux! But we managed!
Kai weighs 14.1 kg (31 lbs.) Woo-hoo! He's getting bigger! :) He looks so thin and small that I fear he'll never get some "meat" on his bones! He's also 101.3 cm tall (3'4")
Rhys is 4.13kg (9.1 lbs) and 53cm (20") Getting bigger too! :)
As for the final diagnosis: Rhys' heart is perfectly normal. Praise God! I didn't really have a "feeling" anything was wrong, but it's always good to have that confirmation, isn't it? We won't need to see the cardiologist again for him. Kai's heart is still the same. His heart continues to grow as he grows, so it is still about a year to a year 1/2 "older" than he is in size. The Cardiologist (Dr. Hosking, I love this man, he fascinates me) increased his Vasotec, but everything else stayed the same. And believe it or not, he still hasn't gotten the results in from the biopsy way back in April! We assume that no news is good news, so I'm not worrying. He said he'd call me when he hears anything. I don't know what the future holds in store for Kai concerning his heart, and I sometimes scare myself when I read stories in the news of boys collapsing dead at school in a sporting event from an unknown heart condition, but the truth is he is doing well and we are treating his symptoms and he doesn't have to hold back…..because, believe me, I couldn't hold this kid back anyways! He is such a blessing!
Bryn also had a doctor's appointment this month and he weighs 12.5 kg (27.5 lbs) and only in the 30th percentile, which was a surprise. He's not as heavy as Kai! Wow!!! This boy is packed like a tree trunk! He's also 86cm (2'9")
Just a quick update!
Kai weighs 14.1 kg (31 lbs.) Woo-hoo! He's getting bigger! :) He looks so thin and small that I fear he'll never get some "meat" on his bones! He's also 101.3 cm tall (3'4")
Rhys is 4.13kg (9.1 lbs) and 53cm (20") Getting bigger too! :)
As for the final diagnosis: Rhys' heart is perfectly normal. Praise God! I didn't really have a "feeling" anything was wrong, but it's always good to have that confirmation, isn't it? We won't need to see the cardiologist again for him. Kai's heart is still the same. His heart continues to grow as he grows, so it is still about a year to a year 1/2 "older" than he is in size. The Cardiologist (Dr. Hosking, I love this man, he fascinates me) increased his Vasotec, but everything else stayed the same. And believe it or not, he still hasn't gotten the results in from the biopsy way back in April! We assume that no news is good news, so I'm not worrying. He said he'd call me when he hears anything. I don't know what the future holds in store for Kai concerning his heart, and I sometimes scare myself when I read stories in the news of boys collapsing dead at school in a sporting event from an unknown heart condition, but the truth is he is doing well and we are treating his symptoms and he doesn't have to hold back…..because, believe me, I couldn't hold this kid back anyways! He is such a blessing!
Bryn also had a doctor's appointment this month and he weighs 12.5 kg (27.5 lbs) and only in the 30th percentile, which was a surprise. He's not as heavy as Kai! Wow!!! This boy is packed like a tree trunk! He's also 86cm (2'9")
Just a quick update!
Thursday, February 21, 2008
Kai's ST Linda has been testing him to see where he is at with language and such, and today's was about comprehension. It started out easy and I was wondering what she would accomplish with asking him to point out the dog from a series of 4 pictures of animals, but as the pages went on, the questions got a bit harder. Such as "studying" or "vest" or "trunk" (of a tree). I was SO proud of him! He did great!
I was talking to Linda about it later and she said that according to his results (which she tallied since Kai no longer wanted to participate, so he kept running off to hide behind the couch!) that his comprehension is at the age level of a FIVE and a HALF year old!!!! I was so surprised!!! That totally made my day!!! I told her that I've been going back and forth on deciding if he should go to Kindergarten in September or not. He'll turn five in November, so he's old enough, but we weren't too sure if he'd be behind the rest of the children or not. If we held him back a year, he'd be sure to be ahead of the kids, and be at an advantage. But obviously I am wondering and doubting that idea since I can't seem to come to a confident answer! Linda encouraged me by saying that she thinks that he'd do fine and his knowledge level is at the right spot; he's a smart boy, he's just delayed in speech. (and potty training, sigh, grr) *I* think he's ready……but is he??? He's got the energy of a kindergartener!!! LOL He's "ready" for it in that sense. But is he???
The idea of sending him to Pre-School for a Third Year seems so sad. Like we're holding him back. When all the other children moved up to Pre-K, he stayed behind, and that's what it feels like we're doing.
So I think I need to talk to his preschool teacher and see what her advice and thoughts are, and talk to a Kindergarten teacher at the school for what we should look for and such. I know that he's behind on potty training, speech (obviously…but even his speech has GROWN! I mean, he is doing so well it's Phenominal!!!) and in his writing. He can't write his name or straight-ish lines well. So we'll need to work on that. But other than that….he knows his A B C D's and can count to 15. Yay! He's actually been trying to read this week too! He'll take a book out that he knows and "read" the story to himself (I can hear him in his room at night). Yesterday, he tried to read this one story of a bunny that he remembered. He didn't get many words correct, but he got the jist of the story across! I'm so proud of him! It's funny (and sad) that as a parent you worry and wonder about the capabilities of your own child. But isn't it amazing when they blow you away with their accomplishments?
I'm so excited about this prospect! I love seeing Kai grow and pass hurdles!
We saw the Cardiologist on the 11th for his bi-annual check-up, complete with ECG and Echocardiogram. The apt was at 12:30, and we get his tests done soon after we arrived at Children's Hospital. I'm so pleased with how Kai sits so still for these test now. I remember how when we first started to go (when he was 1 1/2yrs old….so long ago!) and he would wiggle and scream and cry and it was stressful for all of us! How he's grown! He's now 97cm (apx 3' 2") and 13.1kg (29lbs)…so he's gotten taller…but he hasn't gained any weight in 6ms. I'm sure Bryn is heavier than Kai is…at least he feels it!!! :S The cardiologist has taken note of the lack of weight gain, but since Kai is eating well and seems to be doing well, he wasn't going to worry about it yet. After all, he is NOW Finally ON the growth chart! (well, in the 5th percentile….still tiny…but so is Abi! She's the second shortest in her class; she informed me rather hotly that she is taller than the Thai girl in her class, lol!)
According to the tests, nothing has changed. He is growing and so is his heart, so it's still enlarged. But the good news is that it isn't getting worse.
Since he is at a good size now, the doctor wants to do a biopsy in the Spring on a piece of his heart muscle. This won't be surgery, but will only require catheterization…which is still slightly worrying. There is only 20% of having a positive answer as to what is causing this or anything, but it WILL let him be able to eliminate some issues of what it ISN"T. The doctor will call us in the Spring to set up a date.
So all around, things are going well for Kai. He delights me!
I was talking to Linda about it later and she said that according to his results (which she tallied since Kai no longer wanted to participate, so he kept running off to hide behind the couch!) that his comprehension is at the age level of a FIVE and a HALF year old!!!! I was so surprised!!! That totally made my day!!! I told her that I've been going back and forth on deciding if he should go to Kindergarten in September or not. He'll turn five in November, so he's old enough, but we weren't too sure if he'd be behind the rest of the children or not. If we held him back a year, he'd be sure to be ahead of the kids, and be at an advantage. But obviously I am wondering and doubting that idea since I can't seem to come to a confident answer! Linda encouraged me by saying that she thinks that he'd do fine and his knowledge level is at the right spot; he's a smart boy, he's just delayed in speech. (and potty training, sigh, grr) *I* think he's ready……but is he??? He's got the energy of a kindergartener!!! LOL He's "ready" for it in that sense. But is he???
The idea of sending him to Pre-School for a Third Year seems so sad. Like we're holding him back. When all the other children moved up to Pre-K, he stayed behind, and that's what it feels like we're doing.
So I think I need to talk to his preschool teacher and see what her advice and thoughts are, and talk to a Kindergarten teacher at the school for what we should look for and such. I know that he's behind on potty training, speech (obviously…but even his speech has GROWN! I mean, he is doing so well it's Phenominal!!!) and in his writing. He can't write his name or straight-ish lines well. So we'll need to work on that. But other than that….he knows his A B C D's and can count to 15. Yay! He's actually been trying to read this week too! He'll take a book out that he knows and "read" the story to himself (I can hear him in his room at night). Yesterday, he tried to read this one story of a bunny that he remembered. He didn't get many words correct, but he got the jist of the story across! I'm so proud of him! It's funny (and sad) that as a parent you worry and wonder about the capabilities of your own child. But isn't it amazing when they blow you away with their accomplishments?
I'm so excited about this prospect! I love seeing Kai grow and pass hurdles!
We saw the Cardiologist on the 11th for his bi-annual check-up, complete with ECG and Echocardiogram. The apt was at 12:30, and we get his tests done soon after we arrived at Children's Hospital. I'm so pleased with how Kai sits so still for these test now. I remember how when we first started to go (when he was 1 1/2yrs old….so long ago!) and he would wiggle and scream and cry and it was stressful for all of us! How he's grown! He's now 97cm (apx 3' 2") and 13.1kg (29lbs)…so he's gotten taller…but he hasn't gained any weight in 6ms. I'm sure Bryn is heavier than Kai is…at least he feels it!!! :S The cardiologist has taken note of the lack of weight gain, but since Kai is eating well and seems to be doing well, he wasn't going to worry about it yet. After all, he is NOW Finally ON the growth chart! (well, in the 5th percentile….still tiny…but so is Abi! She's the second shortest in her class; she informed me rather hotly that she is taller than the Thai girl in her class, lol!)
According to the tests, nothing has changed. He is growing and so is his heart, so it's still enlarged. But the good news is that it isn't getting worse.
Since he is at a good size now, the doctor wants to do a biopsy in the Spring on a piece of his heart muscle. This won't be surgery, but will only require catheterization…which is still slightly worrying. There is only 20% of having a positive answer as to what is causing this or anything, but it WILL let him be able to eliminate some issues of what it ISN"T. The doctor will call us in the Spring to set up a date.
So all around, things are going well for Kai. He delights me!
Subscribe to:
Posts (Atom)
