The last few months post IV’s have been so good for Harriet. Following her stint in hospital for a bronchoscopy and subsequent IV antibiotics her health has been stable which is just what we want! She did come down with another cough six days after being discharged but that soon settled with a course of azithromycin. This medicine seemed to work the quickest of all she has ever tried. Looking back over the first half of 2016 I’m not entirely sure how we got through it! It has been a pig of a time. Harriet was getting sick every few weeks and we were in an awful cycle of coughing all night, sitting up all hours desperately trying to get some relief for her but couldn’t. Because of this at her last clinic appointment we were given an inhaler to use with her if needed. I knew that once I got something to try to help it wouldn’t happen again though and touch wood, so far I was right!
The last clinic went really well; chest clear, swabs clear and weight gained! We were so pleased. Harriet had lost a little weight the last time and I take it so personally, silly I know but I am sure every other mother would feel the same. I had gone back and forth deliberating with her eating. She happily eats sweets, puddings etc but we have always struggled with savoury. My sensible head said she shouldn’t really have pudding if she isn’t eating her main meal but after the weight drop I let this go and decided to let her have whatever she would eat. Thankfully this hasn’t done any harm as she has gained weight and lately has surprised us all by trying so many different savoury foods! Hopefully it was just an awkward phase and she will now continue to go from strength to strength with her eating.
Another big change to our routine was the introduction of a nebuliser. While in hospital, Harriet started on D-Nase twice per day initially then dropped to once. Obviously it was new and scary for her at first but gradually she has accepted it. We tend to do it after she has had her evening meal so she is still in her high chair – no escape route! She loves bubbles so that’s what we called it at first and now it has just stuck. She will even ask for her bubbles once she’s finished eating! Whether her improvement in health is down to starting D-Nase, who knows but I for one am glad she is on it now!
In terms of Harriet’s development her speech is coming on in leaps and bounds. She can count to ten, enjoys making animal noises correctly and enjoys to sing and dance. She went to watch her older sister in a dance show and loved every single second! She stood up in her chair dancing the whole time! She is, however, still not walking. She can do it and we are making progress every day but it is very slow. She will walk when she feels like it and we have been told by health professionals that now it is purely a choice issue. She chooses to shuffle on her bottom as she knows she can get to where she wants to be faster than walking. Anyone who sees me on a regular basis knows just how frustrating this is for us as a family. I have almost given up taking her to the park as she refuses to walk and thinks she can scoot along the ground. Groan. So many tantrums have taken place after she won’t walk so gets put back in her pushchair to watch her sister run around playing.
Harriet will be two in October and starts going to nursery in September as I am going back to work. She will only be there one day a week but naturally I am very nervous about handing over her care to others. I will do her medicines, nebuliser and physio treatments at home so while at nursery the only medication to do will be her creon (enzymes to help her digest food with a fat content.) Harriet’s nurse will also come in to speak to staff before she starts so I know she will be fine and no doubt enjoy herself but it is naturally going to be difficult for me at first. She has her first visit this week so wish us luck!
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