Today is Rose’s first birthday. It’s strange to contemplate celebrating a birthday before she’s a year old. At the moment 18 May, her due date, feels a lot more like a milestone for her but as the years go by this day will become the same sort of day it is for full term babies so best to start as we mean to continue. I had planned to have a big celebration and invite everyone who helped get us to this point but after negotiating James and Daniel out of birthday parties this year as I just wasn’t able to even begin to coordinate “events” I realised it probably wasn’t going to be achievable. I’m still hopeful our home life is going to become more manageable with the help of a generous and talented lady, Ali who’s helping me achieve some of the things I need to to get our family life back.
Today we’ll be celebrating with informal cupcakes in the park with my girls and their families and ours (organised by said Girls ;-). I’ll add some photos to this post tonight.
I guess you want to hear how Rose is doing? She’s well! Her Home C-PAP pressure has been put up after a sleep study on Wednesday night, from 4 to 6 so this probably means as she grows in size her Tracheomalacia is causing her airway to become more difficult to maintain while she’s asleep. But the C-PAP is still helping so I’m trying not to look further ahead than that for now.
She’s started showing more interest in solids and I’m gaining confidence offering them. When we first started I was so worried she would aspirate or stop breathing but she’s not done either of those things and seems to like food… tho’ I suspect she doesn’t understand that it requires more than a taste. I’m currently trying to find a good paediatric dietician who can help us introduce a blended diet that will involve sending real food, blended, down her PEG tube (excellent excuse to buy a Thermomix?). I’ve held off to see if we could establish oral feeds but I think it’s time to try to fatten her up for winter as I imagine she’ll be contracting all sorts of respiratory infections that will mean she won’t be able to be fed as much. Until now she’s been having mostly expressed milk but as she’s 9 months and 18 days corrected (today) she really needs more to grow healthily.
She’s vocalising more and we are hopeful that she’ll be able to speak. Her weight is still low (5th percentile) but her head circumference and length are starting to normalise (~40th percentile). She can almost sit unassisted, she can roll but not crawl but it’s all coming and she’s really wanting to move around which is encouraging. Her Hypothyroidism isn’t going away, as she grows, her medication also needs to be increased.
She’s happy, alert, communicative and loving… she adores her brothers and father… I always suspected if I had a girl I’d be usurped and I was so right. She’s the centre of our household! Daniel, particularly, is besotted.
It is an out-of-body sort of feeling when I think back to what I was doing this time last year… I was trying to convince the medical staff at RPA and myself that everything would be fine if they could just stop my labour, I could go home and get on with my day!!
Today is a day to celebrate Rose’s successful determination to live and to live well. I am so proud of all she is achieving every day and I think finally I can say (though not without some reservation) that I am pleased this was the only path presented to us and that we have trodden it this last year and that it has brought us to this now, this now with Rose.
Thank you for your love, support and involvement this year. It feels good to be writing to you, Our People, who understand just what this day means to our family and how many of Rose’s triumphs we are celebrating.
Love to you and yours.