We have been busier than I ever thought possible for the last few months, establishing a Blended Diet (BD) for Rose!
Making your own blends is not an easy process and we are definitely still on the journey to the perfect blend. Rose is only receiving ~800 of the 1,000 calories daily recommended by her dietitian as I am still learning how to balance volume vs nutrient density.
Vitamix has been incredibly generous. They GAVE Rose one of their ~$900 blenders. We couldn’t do the blended diet without it. It’s incredible how well and how quickly it purées everything. I’m so grateful and really touched by their generosity.
The BD support groups are full of parents reporting children thriving on BD and it makes a lot of sense. Parents say children do much better orally when given BD and this is certainly true of Rose. She sometimes asks me just to put the syringe in her mouth which feels like it makes a bit of a farce of all my efforts but it is so thrilling to see!
She finally started crawling while I was away, on my birthday weekend. Mum and Andrew spent some real time playing with her and I think that’s what finally got her moving. With all the admin involved in her care I just don’t have the opportunity to let her play the way a normal baby would. This is one area I hope to really focus on in the coming months as it looks like we are now at the top of the waiting list for some in home assistance / education / therapy!!
For my birthday the girls took me to Leura for a glorious girls weekend of wine, food, bush walk(
s), sleeping, talking and talking. It was RESTORATIVE and so so needed. I think the promise of a weekend away from my life was the only thing that got me through the preceding months! During this weekend the girls did an audit of my life and how they could help me manage a bit better. Consequently I feel like they’ve thrown a rescue ladder down to me in the big black hole I’d dug myself into by trying to cope on my own (It seemed to me I got further and further away from this goal the harder I tried to reach it)! With their encouragement and support I feel like I’m regaining some control over our family life. When I got home I could see Rose had really grown in the 3 days I was away. Sometimes it helps to take a step back to see that her Growth & Development is really happening.
Anyway, this last week or so we have made such a lot of progress that I just had to share!
Rose is almost crawling properly and she’s started cruising around the furniture. She’s about 13 months old, corrected, now and she weights roughly 8.7kgs. Her Growth and Development assessment last month said that cognitively she’s within the normal range. She’s phonating a bit but very quietly. As Nisha predicted a lifetime ago… she does most of her phonating when singing. Her sleep is horrendous and we really do need to reassess where we are with her CPAP as she’s just not comfortable with it anymore.
Loads of other stuff going on but that’s all I can think of for now. Hope everything well with all of you. I think of everyone lots and do try to keep up the contact but I was never very good at it before Rose… another area to work on ;-). Sending you all lots of love from Rose and her (optimistically) ever evolving mummy.