Monday, September 30, 2013
Posted by
FieryCanuck77
at
11:38 PM
Labels:
cardiomyopathy,
delayment,
diagnosis,
faith,
family,
FTT/GDD,
kai,
rhys
Good news!!!
Rhys saw the pediatrician last week and in the past two months, he has gained 2lbs in weight and 4cm (apx 1.57 in.) in height! Woohoo!
I knew he had grown and I could see that he was eating more, but it was so nice to have the doctors see it too! You can also see it starting to climb on his growth chart now. (he's still in the bottom 3% for weight, but it's increasing at least.) He has finally outgrown his 3T clothes and is into 4T to size 5!!! YAY! We see the pediatrician again in two months. (his regular one will be back from maternity leave then so she'll see his growth too! I'm not excited about her being back---so soon? shouldn't you stay at home and bond with your newborn?---but I do want her to see how he is growing as well)
Speaking of his appointment, there was nothing new. They really don't know what to suggest for him, so we don't need to come back for two months again. They like to point out several times, "so we're just waiting for Genetics then..."
I have made an appointment for Rhys with the Dietician at the end of the month as well, just so she can see how much he has grown too! Yes, I am only going for that! She can see things are better and she can close his file and we can stop those silly meetings. I'm sorry, I know that their job is important and it's always good to know proper healthy eating, but every time I have had to see one for myself or a child, it is the same lecture each time: these are the food groups, this is Canada's guide, this is what you should aim for, what are you eating each day? Argh! I do not have a problem with knowing the guide (doesn't everyone? I mean, it's listed in doctor's offices, hospitals, grocery stores...) it's that I have some troubles implementing it all into my diet, apparently. We eat a lot of veggies, so that's not the issue. Maybe we need to cut back on the dairy? or starches, yeah, probably that. But considering our typical diet, I think we eat well enough. (although I really do need to exercise restraint more and cut out the cookies. I love cookies. And most sweet things. Phooey) Anyways...I think that a dietician would be more helpful if they could suggest meal plans or snack ideas. But have you noticed what they do suggest? It's never anything you eat! Increase my quinoa? (which I know is pronounced KEEN-wah, but I still have to say Kwah-NO-ah!!!) Hummus? Chick peas? I don't eat those now! *frown* I guess I should start....
moving along....
I will be happy to have that behind me!
*******************************
Kai finally got in for his annual cardiology appointment at the beginning of the month. Hunny took him into BCCH. I think we were both a little bit nervous about me driving in by myself again, which I was a *bit* bothered by (after all, I had been doing this for 8 years, I could handle it on my own) but I was also looking forward to having someone else do it. Of course, having Hunny go was not at all like what I have to deal with; when I go in, I have to take several other children in with me and try to keep them occupied at the same time. (typically two younger siblings, but sometimes I've had to bring them all in if his apt fell on a no-school day.) It's stressful. I don't like it. I really really don't like it. But I was nice (which also irked me about me!) and I stayed home with R and E and picked up the kids from school and such while he went with Kai.
I have to admit that I wished that I went in as well and got a babysitter for the Youngers. I don't like missing all the information! I have so many questions that I want answered, and I need to know what the doctor meant when he said certain things, and I wish I had something else to go on other than my husband's memory! Maybe I need to learn to let go a bit, but it's hard! I have been the primary caregiver and I feel left out of the loop just by missing one appointment!
The good news is that his heart is still the same. He's growing. His heart is still pumping well. But that's also the bad news, right? Nothing has changed; his heart hasn't gotten any smaller. Yet, Kai is still healthy and active and Dr H is really happy.
He said something interesting though about the origins of his heart enlargement. He has said that we may never know for sure what caused it to happen, but the idea so far has been that it was a virus that attacked it, but no tests have been able to confirm anything. At this appointment, he mentioned that it was possible that this happened in utero. And that shocked me and made me feel ill. Not because I felt any guilt. I knew that if this happened to him as he was growing and being knit inside my womb that it wasn't anything I did (because I recall my pregnancy was pretty easy, other than the nausea and fatigue, of course. And I don't smoke or drink or anything dangerous) It was the general feeling of fear and sorrow that I had. See, my younger brother died as a newborn from an undeveloped heart, and to think that my own son could've had an undetected heart condition while still in me was too close to home and it made me ache. It still does. I can't explain why. The two aren't even connected; they have two different conditions, but in my head I was fearful of those what ifs..... what if they were connected? what if it was worse for Kai? what if they caught it on the 20-week scan, when they specifically look at the heart? what if he was sicker? what if we lose him too? And the fear is almost too much for me to take.
But it's all so silly! Why worry about things that didn't happen? I'm not even getting bothered about things that have occurred, but am feeling anxiety over the ones that could've, as in past tense! That doesn't even make any sense! I should let it go. Why fear over things that happened in the past?
Fear is such a strange and silly thing.
There is this quote in a book that I just finished that makes me laugh: "She picks sheer nonsense out of the air and panics over it." (from the book "The Vanishing Sculptor", also titled "The Dragons of Chiril" by Donita K. Paul. page 205. EXCELLENT series!!! But be sure to read the "DragonKeeper Chronicles first. Those ones are wonderful.) It sounds like me right now, doesn't it? Maybe that's why I liked it so much!
So I'm trying to let things Just Be.
Rhys is good and so is Kai. And that makes me happy. More than happy; relieved, pleased. Maybe at peace too?
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