When Imogen was diagnosed with 3p25 deletion syndrome I focused my energy (when I wasn’t feeding, changing or otherwise looking after our newborn baby) on searching the internet for any information, therapies and charities that might be able to help in anyway. I guess my coping mechanism was to learn as much as I could and feel like we had ‘a plan’, it was my little bit of control in a new world where I felt out of my depth.
One of the first charities we found that provided hope was Brainwave, a charity that aims to “develop the maximum potential of each child by taking an integrated approach to their physical and cognitive development and by aiming to enhance a child’s social skills and emotional well-being.” I didn’t hesitate in emailing them about Imogen and a telephone conversation later, she was booked in for an assessment for when she would be 6 months.
Well time flies, and just over a week ago Imogen, Matt and I took a road trip to Essex for her initial 2 day assessment. Matt treated me to the joys of a local Travel lodge, complete with little chef breakfast, the Ritz it was not! Actually it was fine and Imogen was a star on the journey and whilst staying in the hotel.
On the first day of the assessment we arrived to a lovely welcoming sign with Imogen’s name on it. It’s quite a small centre and all the work is done with 2 therapists to 1 child. So there are only ever a maximum of 2 children in at any one time. There are 2 therapy rooms, 1 sensory room, a family room to relax in, a kitchen for the families to use and a garden with a swing and some sensory instruments in it. We were lucky to have wonderful weather for the two days and it really felt like a little holiday as we sat outside at lunchtimes. Imogen even had her first ever play on grass (being a winter baby the weather has never been nice enough before now!)
On arrival we met with 2 wonderful physiotherapists Sri and Melanie who were with us the whole 2 days; what a luxury to have two knowledgeable, experienced physio’s all to ourselves for 2 days! It was great because although we receive regular NHS physio sessions, they are only 30 minutes long and if Imogen isn’t feeling it at that particular time (as babies often aren’t) then very little can be done. With 2 days we could work hard when Imogen was full of energy and chat through things when she needed a feed or a nap. We could really work on Immy time.
The first day was mainly about doing lots of exercises and play with Imogen so they could get a really good idea of what she could and couldn’t do.
They concluded her tone is near normal, but slightly low. A particular issue is her head control and this is made worse by her ptosis (weak eyelid muscles) meaning she needs to tilt her head back to get the best view which isn’t conducive to getting her to hold her head up. Her movements are all normal and she is following a typical pattern of development, albeit delayed compared to a neurotypical baby. We spent much of the first day in the sensory room as Imogen loves lights, and its easier for her to track bright lights in a darkened room.
At the end of the day the therapists left us to go and write up our programme of exercises that we would follow at home and we took Imogen to enjoy the sunshine at Maldon Promenade with a nice walk and a pub dinner over looking the boats.
The next morning Imogen started the day off by showing us who was really in control as she was sick the minute she was put in the car seat, meaning a full outfit change, a delay while we cleaned the car seat and a trip for Matt to grab some Costa coffee’s and breakfast from subway rather then a breakfast out that we had planned!
She continued in a grumpy theme for much of the day. Typically as we were filming the programme that day, she spent a lot of time refusing to participate. 4 adults and one tiny little girl and you can guess who was in control! at one point a whole 4 hours passed with her either feeding, sleeping or grumping and no physio achieved at all. Luckily we were able to utilise the time running through the written program, completing paper work and taking an extended lunch break whilst sleeping beauty got her rest in the family room.
She eventually perked up enough for the last few hours to be productive and the rest of the filming to be completed and burnt onto a DVD for us to take home to remind us of all the exercises we need to complete daily with her.
We are now proud owners of a therapy wedge and an exercise step to use as a bench for her to sit at, and a program of activities focused around sitting positions, grasping and reaching, rolling, visual tracking, gaze shifting, cause and effect games (such as peekaboo and knocking blocks over) and an awareness of her body parts and size (meaning she can often be found with bells attached to her ankles like a miniature one man band!).
It was a great 2 days and we saw a huge improvement in her head control just from the initial exercises, and a continued improvement since being home. We will visit Brainwave again in early August and we can’t wait to see how she has progressed by then. In the mean time, you’ll find us in our living room sat on a therapy wedge, practising head control with bells jingling and lights flashing everywhere. It’s like our own little daily disco!
For more information on Brainwave visit www.brainwave.org.uk