Developmental gains

I wrote today’s blog in a fairly clinical way. Deliberately. Mr Six and I have been discussing the progress that Little Legs has made since she joined our family. I thought it would be interesting to review that progress in a way that highlighted where she was when she came home alongside demonstrating how far she has come.

Little Legs’ was in foster care for an unusual length of time for a young child who was removed from her birth family at a very early age. Her medical profile detailed a wide range of developmental delays, across a significant number of skill areas. She had had investigations for a wide range of physical and neurological conditions. They had tested exhaustively for her age and had drawn a blank.

Little Legs stayed in foster care for so long mainly because she was a ‘risk’ in matching terms. She had previously been linked to potential adopters who had subsequently withdrawn, following a meeting with the Medical Advisor. So many of her difficulties were ‘of unknown aetiology’, meaning there was no identified cause for the delays. The implication was that it may be an undiagnosed condition that may never improve, or even one that may deteriorate. Her Foster Mummy has said all along that she thinks Little Legs is just doing everything in her own time 😉

And so we met a little girl who, at age three and a half, had not been walking long. She had been through a lengthy block of physiotherapy to get her on her feet. She had progressed on to using a K-walker and wearing Piedro boots to help develop her independent walking. When we met her, Little Legs was walking independently but still very unsteady on her feet. She needed her hand holding to walk on an uneven surface and constant supervision when outside. She wasn’t able to climb stairs independently.

We got her a pair of quality walking boots-teeny size eights! She loved them and was definitely more steady in them. She climbed. She ran. She kicked things. She explored. She grew stronger. She became more adventurous. She wore them everywhere. Until her feet grew this summer.

Little Legs has had significant issues with fatigue and needed ‘rest time’ in front of the tv most afternoons. We planned our days around her energy levels, tending to try and do trips or activities before lunch, so she could be home and resting in the afternoons. We used a buggy for distances to reduce some of the drain on her energy levels. If we went to a play area where we had to walk from the car, we would use the buggy to get her from the car to the play area, leaving her energy resources for the important work of play.

She struggled with many aspects of motor skill activities. Her speech was good but unclear when she grew tired. She struggled with chewing and needed all of her food mashed or chopped up very small. The day she had a go at a whole apple was a truly momentous day! I even sent a photo of her eating it to her Foster Mummy! She still has some issues with chewing and needs reminding to chew things properly, or not put too much in her mouth in one go. She is quite laboured when she moves food around her mouth: a legacy of her super Foster Mummy literally teaching Little Legs how to chew.

Little Legs has very hypermobile joints in her hands and feet. She holds a pencil beautifully (makes me happy as a Children’s Occupational Therapist!) but her thumb bends so far back that she isn’t really that stable when making marks on paper. She also struggles with fastenings (clips, buttons, pen lids, bottles, etc). We’re working on it all and again seeing small amounts of forward progress. She can now fasten her trouser fastenings. She can flick the bell on her bike. She can squeeze a plastic clothes peg. She can open her car door and fasten her seatbelt. It’s all progress.
We decided to get her a balance bike last Christmas. She was so excited, until she tried to ride it! It took her a while, but she got it after a few weeks and has got better at gliding as time has gone on. She is currently zipping around the garden on it, squealing with laughter! She has asked for a ‘proper bike with pedals’ for Christmas.

Over the summer, the girls and I have been out lots on our bikes, with Little Legs riding along in her trailer. There was a noticeable increase in the weight I was having to pull this summer though! She is much bigger and heavier than when she arrived and my legs ached much more this year. We think that next spring we will look into getting a tagalong, where the child is sitting on a half bike and pedalling along. Time will tell whether she has the core strength and general coordination to remain sitting upright on a bike seat for long enough, but we’ll give it a go. She’ll definitely be too big for her little trailer!

As I’ve blogged about previously, Little Legs has made huge progress in her swimming skills and her stamina. When she started her morning pre-school swimming lessons a year ago, Little Legs had to have a couple of hours lying on the settee afterwards to recover. Now she has her lesson just before tea time and does not seem overly tired afterwards. Her core strength is hugely improved and she’s able to get herself in and out of the pool without difficulty. She is even swimming well without armbands these days.

These are the small gains. The ones that the Medical Advisor warned us might not come. But they are. And for now, we’re enjoying celebrating those little victories!

6 thoughts on “Developmental gains

  1. These is huge progress! She needed someone to believe she should get better, and you’ve been there for her. I’m glad to hear all the hard work and dedication is paying off. It will give hope to many too. Thanks.

    1. Thanks Diego! Her Foster Mummy did an amazing job at getting cracking with everything before we even knew Little Legs existed. We are definitely benefitting from that legacy. And yes, I know others talk of big changes once the children are settled in their new families. She’s a superstar!

  2. Little legs sounds similar to my God children they have elhers Dan’s syndrome or supermajority syndrome. They have struggled physically but are doing great now at 8 & 6

    1. Thanks for your comment. Yes, we did have Little Legs checked for EDS and JHS, but both have come back as negative. They’re diagnoses that I’m aware of from my previous life working with kids with disabilities. We are grateful for the small and steady progress she is making every week so far.

  3. Amazing progress, you’ve been there for her and believed she could, I bet she’ll surprise you with so much in the years ahead. Well done to you all.

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