Wee update: Had a phone call the other day from the audiologist to say that although Thomas did well in the tests, due to his needs, he needs an additional test called CAEP (cortical auditory evoked potentials) to measure electrical responses in the auditory cortex. (Yes, I had to google that!) This type of test is similar to an EEG where they use probes to measure the activity. It measures whether specific sounds are being processed in that part of the brain. Interesting…
Also, we were not meant to see his paediatrician till March but she wants to have a meeting next week with us as well as the SLT, VNT and dietitian to discuss a ‘feeding plan’. I don’t know what this means yet, bit nervous because maybe they may suggest an NG tube, we don’t know?
I have worked so hard to be able to feed Thomas from the breast (in terms of fluid) and it is a great comfort for him as well as really nutritional. We have tried so many bottle teats and not succeeded and the cup feeding is ever so slowly being introduced. Yes, after nearly a year I finally got the ok to feed him from a cup. Picture below. It is see through so I can have more control over how much I give him and the material is soft enough so that I can squeeze it to gently mould to his lips.
Thomas is just over 7 kg and nearly 70cm in length. From what I understand, children with challenges similar to Thomas often struggle with putting on and maintaining their weight. Thomas, also, unfortunately cannot have any diary too which rules out a few fattening up tricks. I feel the feeding to be an important focus for Thomas to ensure that he has enough calories to not only grow but also have the stamina to be able to make physical progress in therapy.
With the cup feeding, Thomas is loving the water but I must admit, most of it is ending up all down his neck and front. I have to be very careful to control the amount of water as it moves so fast that Thomas does not have a fast enough reaction time to swallow so occasionally coughs. This is a concern and of course he is not getting enough fluid this way to satisfy so I am a bit worried about the summer and keeping him hydrated.
Will post an update following our meeting at the hospital during the week.
Minding Thomas 