Since I last updated on Charlie's HD journey, things have been going fine. I can't say great as we still have up and down days/weeks but then things seem to go back to 'normal' for a while anyway.
Charlie had a period in March/April when we were back to suppositories and washouts, which was not a fun experience for any of us. Charlie was now more aware of what this involved and was becoming increasingly difficult to convince to lie still while I tried to insert a slippery and tiny suppository and or to lie still long enough to get a decent washout done.
We were even starting to get resistance from Charlie when changing his nappy. I am not sure if this was just a phase that most babies go through or if it was possibly a fear of what we would do to his bum if we had his nappy off. It broke all of our hearts, but we knew we needed to do these procedures to help Charlie out, so had to persevere.
Thankfully things seemed to ease off again and the nappies began to happen slowly but surely. I always have this silly fear that if we do washouts or suppositories, then maybe Charlie's bowel will get used to this and he won't have a nappy on his own ever again, which I know is nonsense but at the time I overthink everything and worry!
At the minute Charlie tends to have nappies most days without issue, he disappears off to the corner of the room, or leans his head on the armrest of the sofa and you can see the concentration on his wee face. When we notice this, we've all become used to cheering him on and encouraging him to keep pushing and telling him he's doing great. Again, probably not the most normal thing to cheer a baby when they are having a dirty nappy but I don't want Charlie to become scared of having nappies. Especially when sometimes they can be loose one day and the next take him a lot of effort to push out, which can be uncomfortable.
The littlest of things can impact on Charlie's bowels, so when he is teething, gets a cold or cough or doesn't get enough vegetables/fruit in his diet, it can slow things down to a halt.
As such we make a conscious effort that the majority of Charlie's diet is based on fruit and vege, with him only really getting meals with meat when he goes to nursery. I don't mind as when he goes to nursery now, he gets lunches like chilli and rice, beef stew and fish fingers and mash. When he's at my parents and at home he gets lunches and dinners such as vege stew, lentil bolognese and vege based soups and sauces with pasta etc. This seems to work for us now and thankfully Charlie seems to love the variety of his lunches and dinners. He also loves to eat fruit.
We obviously started off with fruit purees when weaning him and then my mum got him a silicone feeder, where you put the fruit into the pouch and he chews and sucks the fruit out through the holes in the silicone pouch. He loves it and will eat the majority of fruit that I put into it, except for grapefruit which I think was just a bit too bitter for him given his face screwed up and he shook his head in disgust! We are now working on him eating the fruit without the need of the feeder, which works for strawberries, but not with other fruit for now. I am just glad he loves fruit and will say "more, more" when he's done with his bowl of fruit every evening.
After the last period of having to revert back to washouts and suppositories, I started keeping a diary again of charlie's bowel movements and nappies to make sure he was having them consistently. This also gives me something to discuss with his consultant if he was having another period of little to no nappies.
Recently from keeping this diary, we have noticed that Charlie is having more and more days where he doesn't have a nappy and so the following day we are hoping and praying he has a nappy and giving him lactulose to make sure everything is as soft as it can be to help him push out a dirty nappy. It honestly stresses me so much, the thought of having to do a suppository or washout now. The advice from Charlie's consultant is that Charlie is only meant to go 48hours without a nappy and if there is nothing, then we need to intervene within the 48hours.
It could be that Charlie is constipated and needs help softening the poo before he can push it out, which means giving him lactulose in large enough doses to help soften things quickly, making sure he drinks plenty to keep him hydrated and the poo soft in his bowels and making sure he eats plenty of fibre through fruit and vege.
There could also be a blockage due to hardened poo and then everything is getting backed up after this, soft or not. An indicator that this might be the case, would be staining or small loose nappies instead of normal sized soft nappies. As the loose poo can sometimes push past the blockage resulting in these smaller loose nappies. If this is the case there is also the risk his bowel will stretch slightly and then become used to needing more poo to fill this stretched area before it reaches the end and charlie would get the sensation to push it out.
HD is a guessing game and very stressful when Charlie's bowel motions slow or stop. Now on days where charlie has no nappy, we are giving him lactulose to ensure that everything is as soft to help him push out a dirty nappy. We then tend to give him some more lactulose the following morning to ensure that if he is to have a nappy on this second day that it again would be soft enough to get out without much discomfort.
The issue we've had recently is that on two occasions we have now let Charlie go onto a third day with no nappy, so obviously passed the 48hour mark! We haven't done this on purpose, and even though on the second day we are stressing over why he still hasn't done a dirty nappy, we are also distracted with just day to day routine and getting dinners out, playing with Charlie, getting him bathed and off to bed.
He has also been in great form, his tummy hasn't been distended and he's been eating and drinking fine. I think this is what has thrown us off guard, as previously when Charlie would be having no nappies, he wouldn't want to eat, his tummy would puff up and his form would dip. When we have noticed that we are onto the third day, I've felt so guilty and worried even more until he has a nappy. Thankfully Charlie on these two occasions has then had a number of nappies on the third day.
Although it is fantastic that Charlie has then went on the third day, we need to seriously have no more instances of going over the 48hour mark! We run the risk that Charlie will get a blockage or the amount of poo building up will stretch his bowel.
We have no idea really why this is happening more and more at the minute. The only thing I can think of attributing it to slightly, would be that he is getting what I am hoping is his final molar tooth and had a cold which then turned to a viral chest infection. It just means that going forward, we need to keep a closer eye on his bowel movements and once we reach the second day, up the dose of lactulose and possibly have to bite the bullet and attempt to do a suppository in the first instance to help Charlie out.
Overall though, Charlie is fantastic. He is the picture of health, developing great and full of fun and games now his personality is really developing. He is running about flat out and saying and picking up words and trying to put them together into small sentences. He can say a whole host of words, knows who we all are and is getting more independent each day. We have also started to notice a few temper tantrums if he doesn't get his way, all which comes with him turning two in a matter of weeks! I still can't believe our HD Hero is turning two and is no longer a baby but turning into a real wee mischievous boy!
Potty training will no doubt be the next hurdle we have to endure but I am going to try and be as relaxed about this as I can be as with his condition, I am not going to attempt this too soon and put him off. I would also like his bowel movements to be more consistent again to give us the best chance of this being a success.
All I know for now is that HD is a journey and that it will no doubt continue to go up and down over the coming months and years. For now we are content that over the last two years, we have and will continue to do our best for Charlie.
Xx
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