Thursday, May 30, 2013

new procedures?

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. :/

Wednesday, May 29, 2013

Repeat After Me

Eden is 23 months old and is starting to put together words, this week it's the beginning of 2 and 3 word sentences, which is so exciting! Rhys didn't pick that up until he was 3 1/2 or 4!  It is so surprising for me to see the differences between Eden and the others. Part of it may be from her being a girl, because for sure, both she and Abi had no trouble speaking, but it was painful getting my boys to grasp the skill to turn tongue from babbles to words. A part of it may be largely to her personality too; she is one powerhouse! She is strong in muscle and in her attitude! She delights me as well as frustrates me!

Last night, she woke up at one in the morning crying, of course, just as I was going to bed. (She always seems to know when I'm just ready in bed) I had hopes that since she stopped crying by the time I got out of the bathroom that she had fallen back asleep, but deep down I knew that wasn't likely. Sure enough, she's sitting up in her crib, eyes wide awake, just waiting for me to rescue her. Phooey.  But I'll admit it, as much as I find it frustrating that she wakes up a good 98% of the time, I also do love snuggling with a sleepy child!  Except, this one wasn't sleepy! :(

I'm carrying her down the hall, whispering to her, hugging her and asking, "What happened?"
"What's wrong?" I try again.
"wrong." she repeats
"Are you hungry?"
Ok. Maybe we're getting somewhere.  We go into the kitchen and I open the fridge. I offer some cheese, she shakes her head. I offer her a rice cake. Another stiff response. Is she thirsty? Negative. Ok, so there's nothing in the kitchen she wants. She sees the Keurig. "Daddy?" She already knows that Daddy uses the machine for his coffee!
"Daddy's in bed."
"yes, he's sleeping," I explain.
"well, it's nighttime. Do you see how dark it is outside?" We walk into the darkened living room.
"dark side."
"Yes. It's time for bed."
"Noooo!" she starts to cry as we head down the hall.
I have to stop and turn back so that she doesn't wake anyone else up. I cradle her head to my chest and kiss her temple. She is so precious and still so new. "What's wrong?"
"wrong." she repeats.
"You don't want to go to bed?"
Ok, we are getting no where with this!  "Do you want to go to bed with Mama?" I offer.
"yes, with me."
"Yes, it's bedtime and I'm tired. Let's go!"

As soon as we snuggle up in bed at 1:30am, she gets herself cozy and falls asleep. I wish it were that easy for me! It's such a delight to hear her little voice speak real words, but sometimes getting any real answers out of her isn't easy. She loves to repeat the last word you say!

Monday, May 27, 2013

Little Reader

Bryn is finishing up grade one this year (I know! Grade One!!! *sniff*sniff*)  and throughout the year he's been taking home Little Readers to practice his reading.  It's been a slow moving process from when he first started the year until now. I have to admit that I was worried for him, thinking he'd never get it, even all the way back in January when he was still stumbling over words that I thought were simple ones, like and and the. :(  I didn't know what to do for him, though. How do you teach someone to read???  I am definitely not a teacher and there is a reason why I don't homeschool, even though I admire those who do, so I was hoping that he'd get it soon and that his teacher wouldn't call us aside to start some at-home teaching assignments for him!

I am happy to say that he has!  This weekend, he has read some books to his little brother and he's read his Little Reader book with no problems! I am so proud of him!


I got a chuckle out of his reading tonight though. He was reading a book called "Birthday Balloons" by Beverley Randell. I thought we'd read it before, but maybe it was a different one with a similar title because the story wasn't familiar to me.  As he was reading, he was showing me how he is starting to actually understand the story, as opposed to just reading words! That is so exciting to see! It's hard for a child to grasp the concepts and still take it all in at the same time, which is why sometimes a story can take 20 minutes as they keep getting distracted by the pictures!  In this particular book, a boy named Tom is given 6 balloons by his Poppa for his six birthday.

 Bryn reads the lines: "Here is your present, Tom," sad Nana. "Go on, Tom," said Mom... Bryn pauses. "Why?" he asks me, looking at the picture.
I laugh. "Continue reading..."
"Open the box."  He had stopped in the middle of the sentence!

And then later on the next page:
"Tom opened the box. He saw three little cars..."
Bryn looks at the picture. "There's more than three there!"
I laugh loudly. "Bryn, finish reading first!"
"Oh!" He turns back to the story, "...and three little trucks."
I shake my head. He ducks his head with a smile.
Silly boy!

But he's starting to get the idea, isn't he?  I think that is so great!  I am so relieved that he has managed to go from stumbling over small words to reading a whole book on his own in a few months!  Teachers are awesome!!!

Tuesday, May 14, 2013

catching up

I've sat many times in front of this computer, staring at my blog, wondering what to say, where to begin, how to put my thoughts into much has happened in the almost two-year absence. A lot.

Eden is nearing her second birthday. Yes. Her second. How did that happen? The last I mentioned, she was just a newborn! Yikes!  I truely enjoyed her babyhood, and am getting used to her outspoken toddlerhood!  :)  She is a force to be reckoned with, that's for sure!  It was so much different with her than with the others. Maybe it's because she's a girl, and I had been immersed in boy-stuff for eight years and had forgotten there were other ways of doing things. Or maybe it was that she is just a completely different personality. Maybe the bonding was just deeper with her. Maybe a bit of all of that. I absolutely loved breastfeeding her and I felt so "whole" and closer and deeper with her. I hadn't breastfed B or R due to their prematurity and hospital stays, so it was so wonderful to be able to do that with E. I have to admit that I don't remember loving it as much with A or K, though, as I did with E, but maybe that was due to me being a new mom and still adjusting or maybe it was because I was just happy to have the chance to do it again for E.  Or maybe a bit of both! ;)

It's amazing how much changed in me after having Eden.  For the first time since starting our family, I felt confident! I felt like I knew what I was doing and how to do it. But most of all, I knew that what I was doing worked for ME and I was confident in that and didn't care anymore what anyone else thought! And that says a lot! :) I was HAPPY. Truely happy.

2011 ended off great. Things felt "right" and "good".  ....

And then 2012 was tough and hard and scary and full of so many complex things. Abi almost died in Spring and that threw off the whole year! I can't even express how that feels. How do you explain into words what it's like to be up against that FEAR...the reality that your child can be alive and then suddenly dead? How do I even mention it in a small paragraph without getting into it? I can't. I'll have to leave that story for a later date. She almost died, but God gave her back to us, and when I think about it my chest still heaves and tightens.

After her attack, we had the Olders tested for allergies...and wow, I had NO idea there were so many they were dealing with! That was quite a shock!  So we had a few visits with an awesome pediatrician (whom I still call our "Family Hero"! I love this man!) and learned how to deal with things and learned how to NOT fear every cough or runny nose or need for inhalers or even the sound of an ambulance.  And just as things were settling down, my Father had a heart attack while helping out Hunny at our house last summer, and that threw our family off once again. And that is a scary thing too! He should've died as well, but for some reason, God granted him life and healing (of which he is still doing) and that is overwhelming. And then in the Fall, I had chest pains that ended in an ambulance arriving at our house for the 3rd time in one year! I was fine and am still undiagnosed, but there are a few ideas...but I've never had that type of pain since. It may've been some muscle issues (it wasn't asthma) mixed with fear of my own heart attack, I don't know. But thankfully, I didn't need to be admitted to the hospital and things did settle down.

So much changed last year. Abi changed; she grew up and graduated from elementary school! (She's in grade 6 at the middle school! Eek!) But it was also in her personality, where she had to deal with her own fears and battle to overcome them personally. She has emerged and flourished this year and I am so happy to see that. My heart ached for her last year and I spent many days in tears and crying out to Jesus to heal her and to give us a glimpse of His future and a sense of peace in the journey. And God is good; He answered! Oh, God is so good!

When I look back, really look and list everything big that happened, and stack them up beside each other, I can see how I have changed and how God used it all. It's all connected in some way. The confidence I felt after my fifth child, the feeling of growing out of my immature-young-mother-feeling to a strong and weathered  mom, to the depth of my reliance and trust in my Heavenly Father. God doesn't do things just for the sake of doing them! Everything He does is GOOD and it all points back to Him. And I can see that. I may not feel it is good at the time, and really I don't think I can say that Abi's near death was "good" either, but I can say with confidence that He is good. And I find my strength in Him.

I remember thinking last year that I was frustrated with my lack of spiritual growth. I wanted to change. I wanted to feel the excitement I felt when I was younger. I wanted the passion back! My belief in Him hadn't changed, but the way I lived had. I just lived. Woke up, tended to children, ate food, struggled with kids, did necessary chores, climbed into bed weary and started all over again the next day. Always the same. And I wanted something MORE. And I remember that despite that desire, I still feared to change. I didn't really want to change. I didn't want Him to challenge me! I was frightened what it would mean if He actually took my desire for real and forced something upon me. I was so scared of what He'd demand of me. I had heard so many times of how God will put something really tough in front of you, some huge obstacle that you had to overcome...maybe it was something you had to let go of, or something you had to face, but it was always something that would be a challenge because we can't grow and change on our own. It just doesn't work that way. We need to have a fire under us to force movement sometimes! But the idea scared I never really did anything different to change myself, or grow or search deeper. Every effort I made was just surface enough still. :(  And it was so frustrating.

Do I feel that nearly losing my Daughter and my Dad was God's "obstacle" in my life; my challenge to grow? I don't know. But I do know that those events did cause my faith and my beliefs and my relationship to go deeper. I know that I really do not have a clue! And nothing is in my control and no matter how much I love something, if it's time is up it's up and I don't own anything. And that was scary too. But it also made my faith fall onto the One who IS in control.

I recently finished this wonderful book and there is a quote in it that has struck me that I keep thinking over it. The character, Kale, is angry and upset that her friend is missing and her friend, Dar, explains: "Kale, in your mind you've made us the centre of what is happening. Wulder is the centre." (Dragonspell by Donita K. Paul 2004. Waterbrook Press. pg 82)  No matter what is happening, and what I am going through, it is not about me! But I can trust the One it is about!

Things still aren't settled in our family yet and there is still change to come, but I don't fear it like I used to. It's amazing what you can go through and survive when you have to and have your focus on the right thing!
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