Somehow I’m behind on monthly updates so I’m going to squash two into one. I can’t actually believe that Harriet is going to be one next month! It makes me so sad to see time racing by in the blink of an eye so I make sure I appreciate every moment of it. Harriet has had a busy time as always, days out with the family, cheering Daddy on doing The Great North Run and celebrating Mam’s birthday. We are heading off on her first holiday this week as well so that should be fun!
The most fun is going to be getting her to sleep in the travel cot… yep, I failed at getting her into her own room and cot! I don’t give up on things easily and really thought I had it in me to persevere but after two weeks of no sleep I quit. The final straw came when she cried so much she was sick all over herself, sleeping bag and cot. Argh! I had been letting her cry but going in every few minutes to settle then leave. This particular night I went in and stood there in a daze for a few seconds thinking where on earth do I start here?! I managed to strip her off and clean her up a little then bundle everything into the washer. The only light relief in almost all of this was Harriet’s older sister’s reaction. Anyone who knows Nancy knows she is not a fan of going to bed so when all this was going on I asked her if she wanted to get out of bed to help mammy as she was still awake (shocker).
Her response was ‘no Mam, I’m tired.’ What?! She’s not daft! I even sat Harriet on her bedroom floor while I ran downstairs with the soiled bedding and she complained that she stunk!! She is so funny. So that was the end of that and I gave in. She’s back in our bed which isn’t ideal but it’s basic survival for me. I have a travel cot at the bottom of our bed, it’s been there for two weeks and she’s been in there for a grand total of five minutes. We will try again at Christmas when my husband is home to help.
At the beginning of September Harriet caught a cold which then turned into another cough resulting in another course of extra antibiotics. I am not looking forward to winter but then again it couldn’t be worse than the last six months as the longest we have gone without extra medication is five or six weeks. What I can be thankful for is that she has never needed to be hospitalised or grew any nasty bugs. She’s building her immune system like any other baby so fingers crossed we will have longer periods of being well.
What hasn’t helped is cutting a few teeth too. She now has five with more on the way if her cheeks are anything to go by – nice and ruddy most days! She has lots of new tricks too; she will give cuddles, clap hands, wave etc and is a demon in her walker. She manoeuvres herself ever so deftly around the furniture and scares the hell out of the poor dog who slopes off to the furthest corner whenever she’s in it!
All cystic fibrosis patients have an annual review around their birthdays – bad timing, eh? Harriet had hers this month and thankfully it went very well. Our clinic’s practice is to give patients an X-Ray and take blood, the latter I was dreading the most. We saw all of our team and they were all so pleased with her progress. It was quite emotional as we saw the doctor who probably knows the most about Harriet as he was the first to see us post-diagnosis. He had a registrar in with him and he was telling her Harriet’s back story and how far she had come. Hearing it all back was really remarkable; you almost forget everything she’s been through.
The final part of the night was the blood test and my girl did not disappoint. She dealt with it in her usual laid back way. She was sat on my knee with me holding her tightly, and another nurse holding her other arm, squeezing it. The third nurse went in with the needle and she didn’t even flinch. Just sat and watched. I couldn’t believe it and neither could they. She is so tough it puts us all to shame!
I came away feeling so proud of her. We really do have so much to be thankful for and so much to look forward to.