This week we had 3 hospital appointments with Freddie. And for once they were all very productive!
First we saw the hand specialists to look at doing surgery on Freddies adducted thumb. Since birth we have been trying different splints & physio stretches to try and help the thumb to open by itself. The lady who made the splints for us was convinced it needed surgery but the doctors said it was something that they don’t do until 5yrs so they wanted us to persevere with the splints but with Freddie now being 20 months & still not picking up toys we were keen to sort it out as soon as we could.
The doctor we saw on Tuesday took one look at his hand & immediately said it need surgery if he had any chance of ever being able to use it. He seemed to think if it isn’t operated on before hes 2 it’s unlikely he would ever be able to use…which does make me wonder why the other doctor said wait till hes 5! Op is only a short one & we will only be day patients hopefully. Should be taking place within the next few months.
Second app was Neurology. Freddie was diagnosed with Epilepsy in October. They think it sounds similar to Myoclonic but are not 100% so it’s unclassified for now until we know more about it. We had a bad time last week with his epilepsy. Development went down hill, my happy boy who had just started making lots of aahhhh noises had disappeared & was replaced by a sad, jerky, sleepy boy. Almost like his spark had gone. Once epilim meds were uped he came bk 🙂
The neurologist along with a paediatrician decided to introduce Freddie to a new medicine to help keep them under control. So Clobazam is now being used alongside Epilim to hopefully stop them coming back, but they seem to think it could be hard to control so have set out a plan for the future just incase. They may consider adding a 3rd med or they did think putting him straight on to the liquid ketogenic diet as with him being a bad feeder & having gastrostomy in place it may just be easier. But hopefully the two meds do their job & we don’t have to resort to anything else.
Third app was with our diatician. Freddies sickness from his reflux is begining to get out of control. Since he was a baby hes always been bad with sickness but with the help of gaviscon, domperidone & omeprazole it was kept relatively under control, maybe only being sick once or twice after a feed but hes now being sick upto 5 times an hour. And with him not realising hes doing it he just sits or lays in it until I notice. Not nice for the poor lad. So diatician is going to give us a feeding pump to help us to feed him slower & hopefully reflux meds will be uped. Also weight gain is going well, infact hes getting quite big now, and very long!
Although all the apps went well my organisation skills need sorting badly! We drove an hr to the wrong hospital for one of the apps, forgot the pushchair for 2 of them and got nearly got the time wrongs twice!