Food? Who needs it?!

It's hard to believe it's been nearly 2 years since Miss L started on Pediasure. We were going to a feeding group at the hospital in August last year to try and get her to eat. A year on and food is still a big issue. Miss L gets all of her daily requirements from her Pediasure and food only provides extra calories. We all saw last year that gagging and choking was a big issue with anything put in her mouth. The hope was the feeding group would reduce the incidences of choking. It did a little bit but we mainly just swapped to softer foods. Over the last year we have moved on from puree to more solid foods. Miss L still loves the softer foods though and eats mainly hot chips, bread, icecream and she loves lollies. Things that require biting and chewing like fruit she really struggles with. I find little pieces that she has spat up or coughed up. The amount of food she eats is so small it would barely fill a cup.

So after not much being done since early this year we have been stuck in a holding pattern. Her new therapists had several appointments assessing her eating style. Due to her Ehlers-Danlos they both thought it may be a swallowing issue. After filming her trying to eat they agreed she would need to go in for a fluoroscopy at the hospital and the referral is now in. They also saw how badly she choked when drinking water. Coughing after each sip, red eyes and choking.
This week her speech and OT bought some thickener and we put some in her water. Straight away she managed to drink mouthfuls of water and no coughing or choking. Some good news for once.

Both her speech and OT then started asking me heaps of questions about what she eats, when and how much. We also looked at her growth and weight gain. What we saw was that even though she has more than enough calories to keep her going her rate of growth is slow and steady. She isn't catching up or showing growth spurts. We discussed her bowel habits and the possibility that she really isn't absorbing everything from the Pediasure. Now they are asking we see her metabolic Dr and a gut specialist to look at what is happening with her absorption. This means more tests and investigations that could hopefully lead us somewhere.

Her Paediatrician at PMH is helping look into where we go now. It's hard to imagine that at age 3 she will still be walking around drinking milk out of a bottle but it may be that way unless things happen quickly. Also we are still waiting on the specialised high chair which was supposed to arrive before Christmas, she really needs that extra support.

In the meantime my B12 results came back as abnormal for the 3rd time in a row so Miss L's doctors are all meeting up to see what studies can be done on me and who would I be referred to. This may be another way of finding out what Miss L has....