William has had a bit of a varied week. He's got another nasty cold which has made him not very good at feeding from his bottle and he has also been extra sleepy. He is still coughing lots with his bottle feeds which is not very good. However his fits are still few and far between which is great!
This morning we were visited at home by the occupational therapist and physiotherapist. Although we won't necessarily see lots of them while William is so young it was still a really useful visit. The OT talked about how she can help us get hold of specialist equipment as William gets bigger, such as bath aids. The physio gave us some helpful advice on how to get William to stop lying on one side of his head and what things to do with him to encourage some of his basic baby skills. She showed us how to prop him up better to practice his head control. They are going to try and get hold of a special chair for him to use now which will support him better and hopefully stop him lying on just the right side of his head so hopefully his head will become a more normal shape!
This afternoon we went to his consultants clinic which today was a joint clinic with a specialist from Addenbrookes hospital. It was a really helpful meeting. We first discussed William's seizures. We described the seizures he's having now and they believe he is now having infantile spasms, a different type of seizure. The seizures he first started having 2 weeks after birth are thought to be focal seizures which are being controlled by the phenobarb. Because this medicine makes him sleepy and we haven't seen him having any of these types of seizures recently they are going to try reducing his dose of this to try and get him to be more awake.
We now think, when he started having more seizures at about 7 weeks, these were actually the different type of seizure, infantile spasms. These should be better controlled by his new medicine, Epilim so they may increase his dose of this. They are going to send him for another EEG scan at Addenbrookes to try and confirm whether he in fact having infantile spasms.
We also talked quite a lot about his feeding and the coughing problem. We have been referred to the speech and language therapist who will be able to offer much more advice on his feeding. Please pray we hear from them soon. They think the coughing could be because he is aspirating and so have advised that until we get more of an answer from the speech and language therapist, we can bottle feed him until he coughs and then we have to tube feed. This means he will probably be having about an eighth of his feed by bottle and the majority by tube. The speech and language therapist will observe him feeding and hopefully be able to determine what is causing the coughing. If not, they may decide to do a swallow study which I think consists of an X-ray carried out while William is feeding to see where all the milk is going.
It may be that some or all of the coughing is caused by his reflux. His gaviscon dose has been increased today and the consultant prescribed him another medicine for this to try and control it better, bringing the medicine total up to 4! It's going up!
The consultant from Addenbrookes had the MRI results with him but there wasn't a lot new to say about them. He said there was no obvious pattern and it was much as they thought. On a positive note he said that the condition William has is not usually something inherited and is more likely to be a one off gene fault. We are seeing the geneticist later this month who will look into our case and will hopefully be able to provide much more guidance in this area.
Overall the consultants agreed that William seems to be doing better than they thought he would. They commented on the fact that he can open his hand up which apparently is a positive! They both think it's more than likely he will need a wheelchair as he gets bigger and will probably have a PEG inserted eventually which is a feeding tube which goes directly into the stomach. We asked about the life expectancy of someone with this condition and they explained that the condition itself is not life threatening. However the biggest problems he might face are his fits and chest infections. We understand that if his fits got much much worse and became very long lasting and uncontrollable this could cause him major problems. Also due to his feeding problems and potential future posture problems he is more at risk of getting serious chest infections. Both of these things are totally unpredictable though!
It's been a tough week this week. I don't know why. The house is still very unfinished and it's starting to do my head in a bit! But we're very grateful my dad is here at the moment doing some serious DIY! Life is full of constant ups and downs with William. The littlest smile can bring lots of joy but then the next minute he can be coughing like a maniac which sounds so distressing! We're looking forward to having nana and grandpa back to keep us company and get out the paint brushes!
P.S. The speech and language therapist called whilst I was half way through writing this and is coming next Wednesday! Hurrah! And that was before you all had the chance to pray!
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