Anyway, enough about all that… time for photos!

Happy 2nd Birthday Matthew! xx

They mention in the report what a delightful, interactive and cheeky little boy he is, which is understandable because every time the doctor asked him to perform a task, he threw the object across the room and then grinned a huge smile. The confusion with putting Matty into a developmental stage came about when we were looking at his language skills. Matty has learnt ‘mama’ and ‘dada’ and ‘bubba’ and a few other words that aren’t specific to objects, but he does know that yelling ‘mama’ when crying always gets me into the room. Anthony is very cheeky about this too – sending me to Matty in the middle of the night “coz he called you, not me”. The fact that Matthew does not have a large range of words by now concerns them, but he has another skill that puts him well above this level. He is reading. He turns pages in books and points to different characters or pictures within the book. It is very sweet how he turns the pages – he sometimes just wants to turn all the pages and be done with the book, whereas other times he needs to be told when I am done reading and then will turn the page. All I need to say is “Next page”, and over it goes. This skill is well above that of his spoken language level, but I know that with time Matty will catch up.

I think the sweetest thing my boy can do now is blow kisses and give cuddles when asked. He understands a lot of the words I say, so when I ask for a kiss, he will make a kiss sound. When I ask for a cuddle and I am holding Matty he will put his head on my shoulder and if I am lucky, he will leave it there for more than 2 seconds. Just last week Matty was playing with my keys as I was getting ready to go out. I asked him if I could please have my keys and the little sweetie puckered up and blew me a big kiss! Such a simple and adorable misunderstanding. He thought the word ‘keys’ was me asking for a kiss.

We are still fighting the battle of getting rid of the Nasogastric Tube. We have even dropped his milk intake from 5 feeds of 125mls, down to 3 feeds of 150mls, in the hope that he gets a little thirsty and wants to drink more. Because we pushed the issue for so long, Matty now has a dislike of all bottles and cups and whilst thirsty, refuses to drink. We are keeping him on this lowered milk diet to help him increase his solid food intake and keep him slightly interested in drinking from the cup. He is now allowing me to bring it to his mouth and will grin sometimes and try and tip the cup up himself. The fact that he doesn’t cry every time the cup is near is a great sign. With more time and practice, we hope to be rid of the tube by the end of the year.

Solid foods are getting exciting for Matty. He is starting to dislike being fed and would now rather feed himself. He begs for whatever food I am eating and we have a constant supply of baby snacks available for him to nibble on. I think his favorite thing at the moment is cupcakes as I have been baking a lot. I have started a cake making and decorating business and have been testing my recipes out on Anthony and Matthew. The dog gets his fair share of cake too as Matty knows that the dog comes near if he drops food on the floor. I think it is a game to Matty to see how quickly the dog will come running for a few crumbs. Most meal times the dog sits under Matty’s chair and catches everything dropped or thrown for him.

The last blog entry that went up was to do with Matty’s stoma reversal surgery. Good news is that everything is still working down there. Bad news is that everything is stinky down there. LOL. As he is now experiencing a variety of foods, we are now experiencing a variety of smells. It feels so normal now to be able to leave the house with a minute’s notice. Before the reversal surgery, I would have to plan hours in advance to go anywhere, so that a bag change could be completed and set before putting him in the pram or car seat. As we are starting physio in the pool at our local hospital next week, my current concern is leaking from the nappy while in the water. Eeek! I hope it never happens.

I leave you tonight with a few photos of Matty, taken over the last few months. In a few days time, I will be blogging a collection of photos from Matty’s first two years and don’t forget to check back here next weekend for the photos of his 2nd birthday.

Post stoma surgery

Mmmm… Dummy

The surgeon came in to the ward this morning and mentioned that Matthew was doing really well and that we would definitely be going home tomorrow. I would really like to get us all home tonight and out of a germ-filled hospital where we might catch a cold or flu, so I told him that we would be leaving today as Matthew was doing so well and there really was no need to keep us in. After a minute of pleading my case he agreed on the proviso that we called his clinic in the morning for an update. Of course, we won’t be leaving today if Matthew cannot tolerate his milk at his normal quantity or calorie level, so here’s hoping the little man continues to amaze us.

What you might have also gathered from that last statement is that the surgery went according to the textbook. The bowel surgery reported no issues, and everything has gone back together the way it should. Our ENT specialist that removed the epiglotal cyst at Matthew’s last surgery was also on hand to take a look and ensure that everything has resolved nicely in his throat.

Now back to morphine and creams. Naturally, being a fairly invasive and lifestyle changing procedure, Matthew was put on a fair bit of morphine which he will continue to be on for the next day or so. His nutrition is currently being provided by a drip, but we will slowly be reintroducing formula throughout the day tomorrow, until we’re back to his usual 750 mls. (Actually, we’ve been told by the dietician to really try to push it up to a litre). Once that happens, he’ll start to have motions, and I suspect that this is gonna kind of freak him out. The other issue of course is that the phrase ‘as smooth as a baby’s bum’ is extreme in Matthew’s case. His botty skin is very sensitive as it’s never had to cope with faeces before. As a result, we’re now into a regime of applying two different types of barrier and protective creams at every nappy change.

The other interesting news from today is that after a very long discussion with another of our dieticians (i think it’s our 6th or 7th one) we were very pleased to find out that Matthew has caught up to somewhere between the 5th and 10th centile for his corrected age. That’s pretty good considering his birth weight put him well below the 1st centile.

Leading up to the surgery you spend lots of time not thinking about it. And then before you know it, it’s the night before and you start to worry. You put on a brave face and assure yourself and everyone else around you that everything is going to be just fine.

The morning of the surgery, you get up and with military precision pack the car, prep the child, hook yourself up to your caffeine IV and hurry into the car so you can wait in peak hour traffic.

Once at the hospital you keep cool and play along with all the admission paperwork and question because you’re a seasoned veteran of all this right?

For me, I start to feel nervous around that point when your all prepped and waiting to go into theatre. The poor little fella doesn’t know what’s about to happen or why. Actually you don’t really know what’s going to happen either.

Then they go in to be aneasthetized. Mum took him in this time around and I’ve gotta say she handles it better than I do.

And then you wait.

You do anything to distract yourself. Read a magazine. Check your email. Read Twitter. Distraction is good.

Some time later you start to worry again. Why is it taking so long? Is that phonecall for us to go to recovery? The door opened. Is that the doctor for us?

I’d better distract myself again and write a blog post…

I’ll post an update a little later with word on the progress.

So we have been home for one night and Matthew slept soundly through the night. Shame we didn’t get that luxury – the pulse oximeter probe kept falling off his toe and setting off the alarms which kept us awake until we decided it was time to switch the machine off and get some well-deserved rest. We have decided to not put the pulse oximeter probe on tonight as Matthew is doing so well and because we need to catch up on our sleep

It turns out that Matthew has much reason to be breathing easier too, the cyst they removed was blocked more than 50% of his airway. After coming round and an hour or so of being really grumpy Matthew was back to his normal antics of wooing the nurses with his cute looks (he gets that from his father ) and cheeky tube grabbing. The ICU itself was pretty quiet, with only Matthew and one other patient in there, so that meant that he was sure to get plenty of attention.

Whilst they were in the neighbourhood, they also decided that they’d remove Matthew’s adenoids to ensure that he has the clearest possible airway. In fact, tonight when i said goodnight to him and Mum, Matthew was holding extremely good numbers on the pulse oximeter (better than when he was admitted this morning).

The only slightly bad news today is that there were actually two cysts in his epiglotic region. They removed the large one, however they had to leave the smaller of the two as if they removed both, there was a chance that the two scar areas would fuse and cause a bigger obstruction. We’ll be following up with the ENT department in a few months to make sure that the cyst isn’t causing any issues. (If it is, they’ll simply get in and remove that one too). The good thing is that the remaining cyst is so small it’s not going to cause any issues with intubation for the ileostomy reversal surgery (which we don’t yet have a date for, but expect in about a month).

Peeking through the bars of his cot

Matthew has also begun to speak. I am not talking about babble because he has been doing that for quite some time. I am actually referring to copying us and repeating the word we say. He loves to say ‘Dad’ all day long when Dad is at work, but chooses to say ‘Mum’ only as I come into view or if he is calling me to him. He is also stringing together some beautiful sounds that I am sure is bound to make speech therapy very happy. The other day he even tried to mimic me doing an ‘air kiss’, puckering his lips a little. Unfortunately, by the time the camera was on hand, he was far more interested in the camera rather than looking at and copying me. He is still a very shy boy and does not really say anything when we are not at home.  If he has something really important to say, even though I cannot understand it yet, he does sometimes yell it out no matter where we are.

With regards to Matthew’s feeding issues, we always knew that time would be the best cure. Sure enough we had a fantastic glimpse of what the future will look like. On one particular day, Matthew drank 3 full feeds (each one is 125mls) from his sippy cup. I am unsure if he would have drank any more as his other 2 feeds were scheduled while he was asleep so he never got another chance. Since then his numbers have gone back to his ‘normal’ range (about 30mls), but it was nice to see that it is possible and maybe he will let us have another one of those days very soon. He is doing much better with solid food eating. He can now consume about 60mls to 120mls of puree per meal and these can now range from milkshake thickness all the way to including rice and chopped pasta. He still struggles sometimes and vomits (this may be related to the cyst below his voicebox tricking him into thinking he is choking), but he keeps trying to taste everything. He has also started finger foods and already has favorites. He takes tiny little bites from his rice crackers and enjoys crunching them between his teeth or softening them by pressing them against the roof of his mouth. His all time favorite finger food is…. french fries. He watches me eat them and cries out for the one I am holding, even if he has already got one in his hand. He greedily consumes them and his current record is 3 chips in one sitting (7 chips sacrificed to dog). He likes them so much that he other day he confused my drinking straw with a chip and began to cry because I didn’t offer him any. Greedy little munchkin!

My little monster!

I guess you are wondering why we have taken so long to write all these milestones in seeing as it was a long time between mentioning Matthew’s progress. Funny thing is that all of these milestones have occurred in the last 2 weeks. Some we have been waiting for him to repeat the action so we know it wasn’t a fluke (crawling) and some we have been arguing about (I still think ‘Mum’ was his first word but Dad believes otherwise – for the record ‘Dad’ was said first, but I think he understands that saying  ’Mum’ calls me over to him). I think a little light bulb must have gone off in his head because I cannot explain how he has acquired so many new skills in such a short amount of time. I am so proud of my little boy, who everyday makes me believe in miracles and allows me to be witness to them.