Early January and our first Videofluoroscopy was here. Dixie was just 7 months old.
We had managed to get a cancellation appointment which are rare. This took our waiting time down to about 13 weeks. We had been sent a faded, poorly photocopied list of instructions to follow before the test. What things to bring and how the process worked. Daddy L was working, so with the addition of my sister, AKA moral support in his place, we headed down to the X-ray department at the hospital.
I’d had to starve Dixie for a few hours so by the time we were waiting to be called, she was not a happy little lady. I was dreading the test, I had no idea whether the specialists would get all they needed, whether Dixie would ‘perform’. I just wanted to get in there and then out with a clearer picture of what was going on with her swallow.
Can I just say, the girl did GOOD.
They strapped her into a tumble form chair while they got the puree/fluid ready. I jumped around in front of her like an excitable CBeebies presenter. Anything to distract her from her rumbling belly and strange surroundings.
First up puree. At this point Dixie had only been trying small amounts of smooth foods so I wasn’t sure how it would go. Luckily my girl is a greedy guts. As soon as the food appeared, tears subsided and her mouth opened for the spoon.
The audience of professionals watched everything from behind a panel of windows, discussing amongst themselves whilst I tried to decipher whether it was good news or bad.
Puree was cleared. Phew. Big sigh of relief.
Next up double cream. Yes actual double cream. They had replaced her usual milk from her bottle with this cold drink so I had my doubts she would even take it. I offered it and she clamped down her mouth and began to drink. Woohoo! Honestly she rocked it.
They switched over the cream to her usual milk to tire her out, then back to the double cream again to see if anything had got worse the more tired she had become.
All done. We had a cuddle and finished up her usual bottle whilst the speech lady and the radiologist looked over the results.
And those results were…..disappointing. Although the double cream hadn’t penetrated her airways onto her lungs, it had flickered in and out quickly. Unusually as she tired out, her swallow improved. She was uncoordinated and she also showed some milk going up into the back of her nose. This was expected though as she often vomited right out of her nose! Ick!
Speech ended our appointment saying they would like a repeat test in 6 months (which I found out later was quite unusual as there mostly annually) She had small concerns, but felt as long as we continued thickening her milk to double cream consistency then things would be ok. She also expected that as she got bigger and her muscle tone improved, so would her swallow.
So at least we had some answers.
The following month we started OT at home. Mrs OT came with the play therapist from the community team which was great. They looked at the way she moved her arms/hands. Kicked her legs etc. And chatted about how I could help improve her development from learning through play.
She still wasn’t reaching out her arms for toys above her or at the side. Nor was she grabbing or shaking objects. Mrs OT explained that the muscles at her shoulders and tops of her arms were extremely weak. It would be very difficult for her to just lift her arms up, never mind to grab for something. I won’t lie that it was frustrating that such simple things for you and are were so difficult for her. It was a little sad too.
However, her vision was coming on leaps and bounds and she was starting to look around with interest. Her head control was getting ever better, and she had started to hold her bottle for a few seconds at a time whilst drinking it. She had been rolling over for about 2 months and was getting quicker and more controlled.
It wasn’t all bad. And although she was moving slowly with her progress and her peers were storming ahead, she was improving bit by bit. Her ‘small’ achievements were HUGE to her. To us.
I just had to be patient. Something I’m working on even now. But Ive always believed in her.
I still believe!