One moment, I'm up and think the world is just great and that I couldn't be happier. Next moment, I'm tired and feeling down and wish some things can just get better NOW. I'm not very good with accepting things I cannot change. Wish I was though. It would've made my life so much easier.
So what am I on about? Well, the last few things that wasn't fixed by the operation. Everyone just keep on telling me how grateful I should be for what WAS fixed. How awesome and wonderful and amazing the progress has been. How happy I should be.
Thus, I feel terrible to be so ungrateful to still complain about the symptoms that's left. I really love the improvements, don't get me wrong. I don't want anything to change again for the worse. I really, really am thankful for all that's changed for the better. It's just that sometimes, I still get so depressed about the bad things. It's difficult for me writing about it, because this is such an open environment (the blog).
I feel so sorry for my daughter, because accidents definitely influence how I feel towards her AT THAT MOMENT. Of course, it doesn't change my love for her. These things, just makes me irritated and short-tempered towards her. So unfair, but so human.
So our fight against this inhuman constipation continues. It just doesn't get better. We struggle so immensely, I don't know what to do anymore! NOTHING seems to really help! I've reached some kind of conslusion the other day. My daughter's constipation is made worse by her love for fruit. You'd think it would be the oposite. But remember that her constipation isn't "normal" constipation. Like the constipation most of the population struggles with at least some of the time. Her constipation is because the colon does not get the signals from the nerves to contract. It's totally different from the reason for "normal" constipation.
Fibre is a great thing for the colon, but only if you have enough water, and enough movement in the colon. Then it helps things along. But if you're lacking in water or movement, fibre works like a plug. It stops things in its tracks. I think that's what's happening with my daughter. That's why her diet (lots of raw fruit and veggies) had no positive impact, ever, on her colon. That's why she was so severely constipated as an exclusively breastfed baby. Because her colon doesn't move things along as it should.
So what can I do? I honestly don't know. The only 2 things that the pead could advise, was lactulose and polyethlene glycol (in my country, these are things like duphalac, Laxette and movicol/pegicol). Lactulose works beautifully, but not enough. I'm giving very high doses, and getting a 50% result. Movicol works slightly better, but to find the balance between getting things to work as normal, or causing diahhrea is extremely difficult. And ontop of this, Boeboe absolutely HATES the taste. She hates the taste of both movicol and lactulose. But if she can choose, she choose Lactulose. So we try to stick to that. It must be awful for her, drinking so many spoonfuls of something she hates. Daily.
I've resorted to a suppository a few times as well, and it DOES help. But to force your child like that...:( It breaks my heart into a thousand pieces and feels so totally wrong. She's 7! It's HER body! To force things like this...I just don't think it's right. I've done so many things to her over the years. Forced her to have so many procedures and things to try out. It's difficult. So difficult. So we use the suppositories as an absolute last last last resort.
Geewhizz, a whole page full of talking about sh*t. Sorry about that. But as you can see, it fills my days and it's NOT nice. But, there's still MUCH improvement, so I try to hold onto that. The nr 1 accidents is really so little now. In volume, and in frequency! It's happening about every 10 days still. It's as if she can now control it some more. Somehow I still feel as if there's continuous improvement. So I don't want to go to the urologist just yet for medication or botox. I think she needs another few months to see how much control she can learn over the last bit of the bladder contractions. I have much hope left that some day, she'll be totally continent with her bladder.
After the one night time accident, there was none again. So, in 3 months, just the once since the operation! Praise the Lord! Same with the pins and needles. Just the one incident. Falling down/stumbling/bumping toes....still about 3 times a week. Just amazing. When it happens, I still cringe. I still wish there was none, or once every few months like my 3-year old. But so much to be grateful for.
So as you can see, I should not really complain. Not about the little bit of issues we have left. It's just that I struggle, and I'm not patient or kind-hearted when I struggle. And my daughter has had so much impatience from me, it's so unfair.
The speech therapy isn't helping either...:-( We've fallen behind with this so much, and we got some new assignments for over the holiday, that we had to start this daily from this week. Yesterday, she did one assignment where she had to answer 5 short questions and drew 2 easy pictures. It took her 90 minutes! Of which 14 was spent in two seperate timeouts since she gets so tired and upset about it all. This isn't fair. But what choice do we have? It needs to be fixed now, before she's grade 4 with exams and everything. Being slow with it, is no excuse NOT to do it...:(
Apart from these complaints, we're having a lovely holiday at home! Very relaxing. I'll post some photo's later in the week.
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