Hi geliefdes! I have not written an update in quite some time so here are some recent photos of Eben and I have the following to report: - Eben is doing well with the therapy (physio, speech and OT- all weekly). He can still get from a flat to sitting position on his own due to weak abdominal muscles but it is getting closer. He can stand for short periods but not walk yet and is still bum shuffling (to the physios dismay!) - His weight gain is improving again, almost weighing 7.5 kgs at 19months - He eats very very little daily due to the reflux still being a problem but he is reacting very well to new medicine so he is at least eating a little. The rest of the feeds are given via his feeding tube - He is still on 24/7 oxygen and we are busy wrestling with discovery to try and get them to either supply us with a mobile oxygen machine / pay for the cylinders as the loadshedding is a bit nerve wrecking if you have a child on oxygen and we are going on holiday so we need to be more mobile. Up to now they have declined it because the machine is so expensive but they are still not willing to pay for the cylinders so the battle continues. They have also declined his feeding supplements which we are also trying to appeal as that could be a lifeline as his lungs develop (but he needs to grow!) - His lung specialist is happy, she advised that we delay surgery until he is 2 and also the CT scan because it is a lot of radiation (288 X-rays in one CT scan.. And we thought the 70 something xrays he has had is bad) - we are going to his cardiologist in a few weeks and going to get the ball rolling regarding the Bosanten treatment which is not available in SA and super expensive. That is the only treatment option we have left as Ebens pulmonary hypertension is still a huge problem and obviously life threatening. So we dont really have time to waste, its already probably quite a long process - He is developing quickly when it comes to speach and learning, he is very bright!! Thankfully his challenges are only physical. Other than that Eben is sleeping better and is still a bundle of joy!! Eben and I are a bit suck with flu or something this week, we hope that it will clear up soon! I will post some more photos in the next week too. God bless you xx
Posted on: Thu, 20 Nov 2014 09:43:32 +0000
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