Progress
Things seem to be progressing wonderfully well with Alexander recently. We've finally cracked his refluxy vomiting problem and now instead of worrying us to the point of tearing our hair out, by vomiting after every feed and not putting weight on, he's whittled it down to maybe 4 times a week! His weight is going back up really healthily which is marvellous and means his future operations have more of a success chance.
Development wise, he is coming on leaps and bounds. He's babbling to himself now, kicking his legs all over the place. He hasn't quite got to the "I'm going to shove my feet in my mouth" phase yet, but he's getting there. He holds things now for a short period of time and instantly those objects get put in his mouth. It's just such a pleasure to him do more and more things, with these things combining to show a wonderful little personality.
His feeding is going well. He manages to take around 60-90ml from his bottle now, with the rest being given to him via his gastrostomy tube, which is a vast difference to the 30ml per feed he was accepting previously. In fact me and Kelvin are of the opinion that he's craving something more substantial and that he is showing the first signs of wanting solids. He's really really attentive to what we're eating and drinking and always has something in his mouth, whether it be his hands or his bib, he also has less of a reliance on his dummy which is a huge step being as it was the one thing we couldn't tare away from him to begin with. At four and a bit months old and considering 3 months of that was spent in hospital, I don't think he is doing that bad at all.
The only slight niggly thing is that we don't get much opportunity to take him out as much as we'd like to mother and baby groups and the like. It simply wouldn't be practical considering he is still on 4 hourly feeds (give or take half an hour) and not fully feeding via a bottle. By the time we get there, we'd have to feed him again and for us to tube feed him and also encourage his bottle intake, we need a quiet, clean, calm and private environment, and you simply don't get that when you're out. I'm sure there will be plenty of time for that when all of his operations are over and done with.
As for his operations, we are making progress in that area too. On 26th of Jan he's going to Bristol Royal Children's Hospital for a Cystogram, a procedure where they place a catheter into his bladder and inject a dye and take various images to see whether the dye goes back up towards his kidney or not. This is because when he was born he had this minor kidney problem I think it's the urethra being 1mm more dilated than it should be. I believe it's all connected to his bigger problem. Children born with Type 1 Long Gap Oesophageal Atresia, often get other anomalies connected with it, such as an Inperferate anus, fistula, spinal, heart and kidney problems. In Alexander's case he has a slight un-worrying problem with the valves in his heart, his kidney problem and an Inperferate anus.
Then on the 28th of Jan he's back to Bristol for an Endoscopy to make sure the major op he had on his oesophagus has healed correctly and poses no problems.
We've just got another appointment to go back in the end of February for the first part of the corrective operation on his bowel which is brilliant, as we didn't expect it to come so soon.
Development wise, he is coming on leaps and bounds. He's babbling to himself now, kicking his legs all over the place. He hasn't quite got to the "I'm going to shove my feet in my mouth" phase yet, but he's getting there. He holds things now for a short period of time and instantly those objects get put in his mouth. It's just such a pleasure to him do more and more things, with these things combining to show a wonderful little personality.
His feeding is going well. He manages to take around 60-90ml from his bottle now, with the rest being given to him via his gastrostomy tube, which is a vast difference to the 30ml per feed he was accepting previously. In fact me and Kelvin are of the opinion that he's craving something more substantial and that he is showing the first signs of wanting solids. He's really really attentive to what we're eating and drinking and always has something in his mouth, whether it be his hands or his bib, he also has less of a reliance on his dummy which is a huge step being as it was the one thing we couldn't tare away from him to begin with. At four and a bit months old and considering 3 months of that was spent in hospital, I don't think he is doing that bad at all.
The only slight niggly thing is that we don't get much opportunity to take him out as much as we'd like to mother and baby groups and the like. It simply wouldn't be practical considering he is still on 4 hourly feeds (give or take half an hour) and not fully feeding via a bottle. By the time we get there, we'd have to feed him again and for us to tube feed him and also encourage his bottle intake, we need a quiet, clean, calm and private environment, and you simply don't get that when you're out. I'm sure there will be plenty of time for that when all of his operations are over and done with.
As for his operations, we are making progress in that area too. On 26th of Jan he's going to Bristol Royal Children's Hospital for a Cystogram, a procedure where they place a catheter into his bladder and inject a dye and take various images to see whether the dye goes back up towards his kidney or not. This is because when he was born he had this minor kidney problem I think it's the urethra being 1mm more dilated than it should be. I believe it's all connected to his bigger problem. Children born with Type 1 Long Gap Oesophageal Atresia, often get other anomalies connected with it, such as an Inperferate anus, fistula, spinal, heart and kidney problems. In Alexander's case he has a slight un-worrying problem with the valves in his heart, his kidney problem and an Inperferate anus.
Then on the 28th of Jan he's back to Bristol for an Endoscopy to make sure the major op he had on his oesophagus has healed correctly and poses no problems.
We've just got another appointment to go back in the end of February for the first part of the corrective operation on his bowel which is brilliant, as we didn't expect it to come so soon.