A day in the life

William is still being sick so we're still doing frequent small feeds so thought we'd share a current day in the life of William....

6am-6:30am - Woken by daddy and given my Epilim and first feed. Each feed takes about half an hour once I've been aspirated and had my milk and gaviscon. Once each feed has been given the feeding syringes are washed.

7am - I was sick in my moses basket when daddy put me back down so daddy had to change me and my sheet.

7:45am - Mummy puts syringes in sterilising solution. This is done 15 mins before every feed.

8am-8:30am - Given my second feed by mummy by which point the syringes (which have to be used for a day before discarding) have decided to already get very stiff so trying to operate them hurts mummy's (and daddy's) hands.

9am - Dressed by mummy

10am - Arrive at garden centre to meet friends

10:20am - Be sick all over my jumper

10:30-11am - Fed by mummy at garden centre

1pm-1:30pm - Fed by mummy at home

1:35pm - Throw up my whole feed all over my clothes and rocking chair. Mummy cleans up sick and changes me.

2:00pm - Mummy gives me my Phenobarbitol

2:30pm - Mummy sterilises and fills my bottles

3:00pm - My community nurse comes to check out one my medicines which has been supplied as an injection for some reason and advise mummy on my sickness. She is going to call tomorrow to see how I am.

3:30pm-4:00pm - Fed by mummy at home

5:30pm - Get very sad and grumpy when woken up for nappy change. Crying makes me wretch a lot so mummy and daddy spend the next half hour holding a bowl waiting for me to be sick so they can prove to the doctors how little of my food stays in after I've been sick. Decided not to be sick though in the end after several close calls! Given calpol!

6:00pm - 6:45pm - Fed by daddy at home slowly after previous wretching to ensure food stays in

7:00pm  - Mummy and daddy eat take away pizza as no time to cook tonight!

8:00pm - Given my lansoprazole medicine.

8:30pm -9:00pm - Fed by daddy at home and given my second Epilim dose.

8:50pm - Mummy writes in my blog.

9:30pm - Daddy sterilises some more bottles

10:30-11:00 - Fed while (hopefully) asleep in my moses basket, and then (hopefully) I will not be sick but sleep peacefully until 6am, although in reality I will probably wake mummy and daddy several times during the night with my coughing/gagging fits!



It's a good job I'm cute!



Update

Hello!
We are home now, got released yesterday so only stayed one night. Once we got thr hospital they told us to halve his feeds and give them every 2 hours instead of 4. That seemed to help and he started keeping milk down. They think he may have had bronchiolitis again and did do a test to see but we never heard the results so not sure! He's really snuffly so it could be that or just another cold. Since we've been home he's just been sick once but we're still doing fairly small feeds more regularly for now.

Helen stayed the night in hospital this time with William and had the worst night ever! His oxygen monitor would alarm every 30-45 mins just as I was about to get to sleep and I was freezing cold with just a little blanket and got all paranoid about what the nurses thought of our parenting! I'm just a bit of an over worrier! Steve and I are now coming up with ways to better deal with future hospital stays. Steves work have been really understanding so far and we don't want to take advantage of that in any way so he's going to talk to them about things we can do to ease the situation.

Despite his cold William is in good spirits as usual and been giving us some lovely smiles today. He seems to have really taken to his glow worm toy because it plays music and lights up. It's about the only thing we can get him to actually look at but he does seem to be gradually improving with his looking!

 Life with William has so many ups and downs as I'm sure does life with any child, especially a child with additional needs. There are moments when he smiles when its amazing or when hes laughing or sleeping peacefully or when we notice him doing something better than he did before. Then there are moments where its hard work, where it feels like all we do is sit holding a feeding tube only for it to be thrown up 5 minutes later, when you're in hospital and feel really cut off from the world and when you see other children doing things that we know he nearly definitely won't ever do. Although we always love William we don't always love being parents. The biggest challenge, to me at least, is the feeling of being totally out of control, not being able to make plans that we know we can stick to and not knowing which medical person to ask what etc. We know that God is in control, but sometimes remembering that and trusting that is hard. Anyway, enjoy the photos!

prayer request

Just a quick one...we're about to take william into hospital because he's been very very sick after each feed since yesterday evening throwing up pretty much his whole feed. We spoke to the community nurse who spoke to his consultant who said to take him straight in. Please pray for us all and that we wont have to stay too long and that it'll be something minor causing it. He did start on a new medicine last night so it may be that, we're not sure yet.

More laughing...

Below you can hopefully see a couple more videos we caught of William laughing to himself! Make sure you have your sound turned up!

Also, a couple of people have said they've had trouble leaving comments on posts. I've now changed the settings to make it easier to comment. When you choose to leave a comment, select Name/URL from the Comment as drop down list, then just put your name in the box that pops up and leave the URL box blank. It should be lots easier!

William laughing 2.avi

William laughing.avi

Sunday 13th Feb

Here is a little update on how William is doing...

We are still having a few problems with his fits. Since his phenobarb was reduced they have continued to increase in frequency so on Friday they told us to increase the dose again and he has had his epilim dose increased. However, he is still having fairly regular fits. We're just going to see how we go in the next few days. If they dont improve much or they get worse the hopsital may increase the dose again. We may have to go in for this, we're not sure. It's so hard to know when is the right time to seek more advice and when we just have to ride it out a bit. His fits are part and parcel of his problems and they always said they would be difficult to control. 

We are also still having trouble with his new reflux medicine. After the last one wouldnt go down the tube we called the consultant who said it wasnt intended to go down the tube but that she would prescribe him a different one which could. We picked this up on Friday and found it to be even worse. It totally clogged the tube up and it took Steve over half an hour to clear it. We were on the verge of pulling the tube out and putting a new one in! We have abandoned the med for now and will try ringing the pharmacy for adivce this week.

The speech therpaist came to see us last week and was very helpful. She observed him feeding and listened carefully to his throat. She has given us some tips to help with his bottle feeding. She said that he is very uncoordinated with his sucking and swallowing and forgets to breathe so we now have to remove the bottle for breathing breaks! She has advised us to carry on bottle feeding but for no longer than 10-20 mins each time. Hopefully we can build up the amount he takes before coughing. She was worried that he may develop a negative association with bottle feeding and coughing so we just need to take it slowly. If hes awake for his feed he can manage about 1 third of his feed orally. Its not always this much though depending how sleepy he is.

He does seem to be awake more these days and is still practicing his smile. We're trying to make the most of his awake times, especially with his positioning. The flat bit on his head seems to be getting worse so we're trying to encourage him off lying on it by putting him on his side more or sitting him propped up. The OT is coming round this week with a rep from the company who make the chair they are trying to get him to trial him in one. Hopefully this will help him to sit straighter.

He's doing well with his sleeping and is generally a contented little chap. As he gets a bit bigger, the difference between him and other babies his age is becoming more obvious, especially with his head control and alertness. In a way this makes it easier for us. Before it just seemed like he was developing slowly and it was easy to get dissapointed that he seemed a bit behind because perhaps we had got our hopes up that maybe he would develop some things 'normally'. It's now more obvious that he is different which means we compare him less and just accept him more for being him and being different. He's different from most people but he wouldnt be him if he was more like most people.

Oh and his tube accidentally came out again last week so Steve has now succesfully put back in 2 tubes!

Laughing boy!

NG Tube fun

Well on Friday morning at 5am after a feed William decided to be spectacularly sick all over our bed! We changed him and the bed and as we were putting him back into his sleeping back his tube got caught between Steve and the bed! Somehow the tape holding the tube in place got ripped off his face and out came the tube! As you can imagine we were less than impressed at that time of day!

Chilling with cousin Adam

However at 7am we got up to attempt to put the tube back in ourselves before his 8am feed. Helen took the role of head holder and tape applier and Steve took the brave roll of tube-putter-iner-er! After a couple of attempts he got it in and Steve was very very pleased with himself! We are now visiting Helens family in Cheshire and William's tube came out again while Aunty Ang was changing him (so we're blaming her!!). Thankfully after our previous successful attempt we were moderately confident we could put it in again saving us a trip to the local hopsital. Steve managed to get it in again so is now quite the expert! It's so good to be able to do it ourselves and not need to worry so much about having to go to hospital. It may well get harder as William gets bigger and stronger but at least we're getting practice in now!

William's doing pretty well at the moment. We're having some trouble with his new reflux medicine. Its a tablet we dissolve in water then put down the tube, but the dissolved tablet gets stuck at the bottom of the syringe and what does get in the tube is blocking it so we're having to suck it back out to get the milk in! Think we'll be calling the nurse this week about this little dilema!

Today William has been to meet a new friend. Our friends recently had a baby so we have been to meet the lovely little man today. William was very excited to meet him. This evening we have all been hanging out with Aunty Ang and cousin Adam watching the Les Miserables 25th anniversary DVD having a bit of a sing-song! William has not been very impressed with his dad's singing though.

We're all really hoping nana and grandpa can successfully fly home on Wednesday following all the snow in the USA. Please pray they get home safely and their flights arent cancelled because Helen doesn't think she can cope too much longer without them! Plus, our hall isn't going to paint itself! ;-) Haha!

This one has to be a proper smile...

Lots of important people

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!