My Little HD Hero update

I haven't posted for about two months now. I decided in January as a New Year's resolution that I would make more of an effort to post about Charlie and his HD journey, but then life got in the way.

I also wasn’t in the right mind set to document our journey as any posts I had drafted were ranting and negative, so I just avoided it. I took the stance if I haven’t got anything worthwhile to say, there was no point saying anything at all.

Although I want to be honest about our entire journey with HD, detailing the highs and lows, I didn’t want to post only negative, moany posts when my emotions were ruling my mind. Over the last month or so there have been a few changes with Charlie and myself and I feel ready to try and journal our HD journey a bit more regularly as I originally planned.

Firstly, I've recently started a new role in Queen's University and my working hours have changed slightly which has made a world of difference to my work life balance. I'm still full time but just starting slightly earlier and so finishing up earlier too. This means I get home and Charlie isn't waiting on me ready to pounce before I've even got my coat off! I have time to get into the house, get out of my clean work clothes, do some housework and get tea sorted. All very boring aspects of life, but I wasn’t getting these things done when I got home after my boys, as Charlie would cling to me all evening. A messy house and mounting washing and ironing was playing havoc with my mental health. This new home time has helped no end and I am also loving the brighter evenings on the drive home!

Secondly, we moved Charlie into his nursery in a bid to try and get some more much needed sleep! I was co-sleeping with Charlie, with his cot attached to our bed with the side down, which was so handy for nights feeds but I was sleeping so lightly that I may as well not have been sleeping at all. I had visions that when Charlie moved into his own room, he would sleep a full night through, but since his relocation, he has slept worse than ever and fed like a new-born again. It has been tough going and my husband and I can joke about it during the day but at night there have been a few choice words exchanged with each other as we’ve tried desperately to get Charlie to sleep better. We are getting there with the sleep and may have just found the breakthrough we needed, although not what we expected! I’ll do another post on our new unconventional sleep arrangements!

With these few changes in our lives over the last couple of months, I feel in a slightly better head-space to start giving myself the time to journal our HD battle.

Charlie has continued to have ups and downs over the last 2 months and we were back doing washouts and suppositories as the nappies had stopped again. Although I reckon we have worked out why this happened this time. After Christmas Charlie started eating the nurseries lunches, so I wasn’t having to send in my home cooked meals anymore. It was great he was eating things like Tuna pasta and Spaghetti Bolognese amongst other things, but his intake of vegetables had decreased. He had been on a diet of 90%vegetable based meals and only a little meat here and there. Now he was getting a lot more protein and at least 50% less vegetables than normal. We have kept him eating the nursery lunches and introduced more vegetable based dishes in the evenings and when he is with my parents. Slowly over the weeks, he started passing more wind, and having more nappies again. I can’t say for definite this is the reason he is pooing again, but I really do believe this is the reason!

Charlie is now walking flat out, I would even go as far to say as running about flat out. He is out of the pre-walkers and into proper first shoes which are adorable! He is chatting and babbling away at every opportunity and his personality is really shining through! He can say goggy which we know means (doggy) which is his favourite word, he loves Alfie our Labrador as his wee smile speaks a thousand words when he sees him. He can wave and say bye bye, give high fives, shake your hand when you say nice to meet you, he constantly smiles, loves a good tickle and giggle, loves music (Baby shark and the Hokey Pokey are two firm favourites), nursery rhymes (two little dickey birds) and a wee boogey.

If you can’t already tell, we are so super-duper in love with Charlie! Life is passing by in a blur, we don’t know what we did with all of our time before but we are loving every whirlwind minute.