Matty's Blog

That’s how fast Matthew is achieving some of his toughest milestones at the moment – it’s like a gun firing off. For starters Matty has just started to crawl. He is still learning so he currently looks like a soldier as he can only do a commando style crawl. With time and more physiotherapy we should be ‘properly’ crawling within a few months. We have had to double the size of his playpen so that he can get around a lot more and isn’t confined to such a small shape. It isn’t uncommon for me to hear a particular toy on one side of the playpen make a sound, and then hear a completely different sound on the other side within the same minute. He seems to have learnt rather quickly that this is a way to get what you want. His physiotherapist is very happy with the range of movement that Matthew is starting to build. He is able to sit up and balance very well, even when she attempts to tip him over (she looks at reaction times and technique). He is also beginning to stand in a special standing frame that the physiotherapy department had built for him. It allows Matthew to stand straight, with his feet facing forward and ensures that there are no ‘boo-boos’ from falling down as he does not have the stamina to stand for too long. In the frame however, Matthew is able to stand for over half an hour and play with toys on a desk in front of him. We know he is progressing with this frame as there are no marks under his armpits when we take him out, proving that he is holding his own weight for most of the time. You little champion!

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.

Pam, February 7th, 2010, 0038h | Category: Uncategorized | Comments (2)

Well, unfortunately, not everything went to plan this morning. Don’t worry though, everything’s ok. This morning we got Matty all ready for surgery, and whizzed down to the hospital for a 6:45 checkin. After all the signatures and documentation formalities, Matthew was given a quick checkover and then I took him in to be anesthetised at around 8am.

Matty dressed in his hospital gown all ready to go

He didn’t really enjoy being put under.. i don’t blame him – if you don’t know what’s going on, it must be a terrifying experience. After that, i went to join Pam in the waiting room….

A short while later, Matthew’s surgeon came in to see us. Apparently, when the anesthetist went to intubate Matthew (put a breathing tube down), they noticed a cyst just below his larynx. The problem with that, is that it would mean that it would likely cause complications when the tube was to be removed after the surgery and could quite possibly result in emergency surgery and a tracheostomy. So.. rather than risk it, they deferred the surgery until the Ear Nose and Throat department can go in and deal with the problem.

We had a chat with the ENT specialist a little later (who had a look at the cyst in theatre). The revised plan is now to book Matthew in to have the cyst removed/drained in about a month. About a month after that, when he is all healed up, then he can go in for the ileostomy reversal.

Matthew is still at the hospital with Mum and they’ll stay there for a few hours under observation. He was a pretty cranky little fella when he woke up, complete with IV, drip and monitoring equipment. After a while in the recovery ward, however, he seems to have calmed down and is almost back to his normal cheery self.

So, although the outcome isn’t what we expected from today’s events, it’s still a good outcome and could have been a lot worse.

aj, January 29th, 2010, 1249h | Category: Uncategorized | Comments (1)

Tomorrow morning Matthew is going in for surgery to reverse his ileostomy. This means that tomorrow, we’re trading the ostomy bag for dirty nappies! It’s one more step closer to normality.

The surgery itself is fairly routine, however Matthew will still need to go under a general anesthetic, be put on a ventilator and spend a few days at PMH. Naturally, Mum and myself are pretty nervous, but we know our little man is a tough little fella and will be just fine.

I’ll let you know how it all goes.

aj, January 28th, 2010, 2346h | Category: Uncategorized | Comments (1)

Matthew! His hair has been getting rather long and looking like a mohawk  so we decided it was time for Matthew to get his first haircut. Off we went to the barber (neither of us trusted ourselves with the task) where Matty got to put on a Snoopy themed cape and get his hair cut by a pro.

The 'Before'

Dad got into the barber’s chair and sat Matthew on his lap. Matthew was not very happy with having his hair cut, but at least he was still while the barber was using his scissors. Mum stood next to Matthew and collected a bit of his cut hair in an envelope to keep for his baby book. After it was over, Matthew had a much more handsome hairstyle… don’t you think?

The 'After'

Side view

Pam, December 7th, 2009, 2239h | Category: Uncategorized | Comments (2)

Hi Guys. It’s been a while since i’ve updated, and yep, you guessed it, we’ve been busy.. man have we been busy. Barely a day goes by when we don’t notice some new skill that Matthew’s picked up.

So, where to begin in the recap of the last few months… Well.. lets start at the end and work our way back. Matty passed the one year anniversary of his due date about two weeks ago. He’s now up to about 8.5 kilos and although he’s slowed in his weight gain, he’s still making some progress. He’s doing pretty well with his solids these days, and is keen for a variety of different types of foods. We’ve been trying out all sorts of new flavours and he’s been pretty accepting, all things considered.

MMMm chocolate pudding. Note the inaccuracy with the spoon

Speaking of feeds, a few weeks ago we made the decision to drop his 3am feed. Pam is pretty grateful for the uninterrupted nights sleep these days, and in fact, I think Matty’s happier too. He sleeps all the way through the evening from around 11pm until around 9 to 9:30 every morning.

Matthew had his 1 year corrected developmental followup with neonatal. It’s the kind of visit where he gets to play with a whole heap of toys such as blocks and string and other bits and pieces whilst the doctors watch how he goes. As expected, Matthew’s unfortunately quite behind… but like i said, all things considered he’s doing ok. In fact, it really seems sometimes that Matthew’s mind is way ahead of what his body can handle. You can see he gets frustrated at times, because he really wants to do the next skill before he’s mastered the first one. I guess in that respect he’s like his dad.. bored easily.

At about the same time as Matthew’s 1yr followup, we also switched care from the neonatology dept over to the early intervention clinic. This means that Matthew’s now in the care of a different team of specialists and we get to have big meetings with them all about once every few months. At the end of the last meeting we got a really good overview of Matthew’s skills (as graded by the hospital). Speech therapy is really thrilled with the variety of vocal sounds that Matthew is using. The physio is pretty happy with Matthew’s newly acquired skill of sitting unaided although they do agree that when he does get tired, he tends to throw himself backwards, so it’s important that we’ve always got a soft landing spot for him. The EIC also gave us lots of tips and advice on ways that we can help Matthew progress with his current skills and lead him towards the next steps.

Bathtime!

At Matthew’s last ENT (ear nose and throat) appointment, they expressed some concern about his apneoas that he seems to have (discovered on his sleep study). Whilst the incidents have only been mild, they’ve recommended surgery to remove Matty’s adenoids in January – so it looks like we’ll be spending another night in hospital in the new year. If all goes well with the surgery, it might be a simple day procedure and we’ll get to go home the same day.

Last time we mentioned that Matthew might be coming off oxygen soon. Well, we’ve been completely off oxygen for a few months and although we did have to put him back on for a couple of nights during a small cold, he’s been doing really well without it. We even felt confident enough to send all those oxygen cylinders back to BOC (we did keep a single small cylinder as a security blanket).

Shortly after going off the oxygen, we also weaned ourselves off the pulse oximeter. The only tube that Matthew has left is his NGT (unfortunately, it still looks like that one’s going to hang around for a while longer).

As for Matthew’s stomal surgery, there’s still no plans to do the reversal just yet. In all honesty, it’s working well so if it ain’t broke, there’s no need to fix it (yet).

Matty takes a snooze on a sunday evening after a big day out.

Apart from medical stuff, with the transition of the seasons to spring, we’ve been able to get out a lot more. In fact, in the last few weeks, we’ve done 17km of the Bibbulman Track with Matty, been birdwatching at the Rio Tinto & Birds Australia annual birdwatch and generally gotten out a whole lot more. In fact, we all went out this afternoon for ice cream at the beach

A stop for lunch on the Bibbulman between Mundaring and Kalamunda

So.. That’s Matthew’s progress over the last wee while. All in all, we’ve been pretty busy, and if that wasn’t enough, we’ve decided to fill in our spare time (lol, as if we had any spare time)  with other things such as my new job, selling our appartment and buying a new house. Just before christmas we’ll be moving into a huge 5 bedroom house in the northern suburbs where we’ll have heaps of room for the dog to run around, Matty to crawl and a place for babysitters (read: grandparents) to stay!

aj, November 29th, 2009, 2330h | Category: Uncategorized | Comments (1)

We have been waiting for a really long time around here for Matthew to finally connect all that Physiotherapy work to completing the task of rolling over from back to belly. He finally did it today and even managed to do it 3 times in under 5 minutes! Hopefully with the acquisition of this new skill, Matthew will be able to reach for his toys and develop some of the movements that lead to crawling.

It is pretty incredible that Matthew managed to have the energy to do the rolling over considering he has been suffering from a cold for the last few days. His nose has been running quite bad, but thankfully he has not developed a fever, so it has been nice and mild. He is back on the oxygen at night time just to give him a boost in his oxygen saturations. His numbers on the pulse oximeter were a little low and on the advice of PMH’s Ambulatory Care nurses, we taped the tubes back on his cute little face. This is no easy feat as the little guy squirms so much to avoid the tubes being put on. I am happy to report that is seems like it is clearing up and he is getting better. Hopefully tomorrow night we can turn the oxygen bottle off for good (again).

Matthew’s solid food eating has improved greatly in the last few weeks. He is now taking at least two tablespoons per meal for his three day feeds. His repertoire now includes pureed chicken and corn for his dinner and an apple and blackcurrant jelly for dessert. Keep up the good work Matthew!

Pam, October 4th, 2009, 0036h | Category: Uncategorized | Comments (1)

Matthew has finally done it! No more supplemental oxygen! The results from the sleep study came in and they show that Matthew is able to stay off the oxygen overnight. It did, however, show that he had an episode of his oxygen saturations dropping below 90% which isn’t really a problem unless  he stays there for too long. He stayed under 90% for over a minute, which does concern them, but they know he is fine because he bounced right back to the high 90’s after that minute. We are under instructions to allow Matthew to stay off the oxygen, but at any signs of him staying under 88% (our alarm limit on the pulse-oximeter monitor), to put him back on the oxygen. Last night, he did not alarm once (at least a legitimate alarm – Matthew likes to wriggle until the monitor loses trace and its shows that he has no heart beat – we don’t believe it for one second).

In other news, Matthew is now a big boy of 8kg! He is taking his solid foods very well, now being able to wolf down 2 tablespoons of food at every daytime meal. Like any child he has his favorite food – Heinz Vanilla Custard. We can get him to fit in a few extra spoons after a meal of vegetables or chicken as long as it is that vanilla custard. Sweet tooth, just like his mum!

Pam, September 24th, 2009, 2340h | Category: Uncategorized | Comments (2)

About two weeks before the night of the sleep study, the hospital sent us the admission forms to fill in along with a list of what to bring with your child. One of the items they suggest is a camera to document just how many wires are attached to your child. Thankfully, we took their advice as it was quite a sight to see, but unfortunately, the photos do not do the sight any justice.

Why would you do this to me?

Upon arrival and admission to the ward, Matthew’s head was measured and dots were drawn with marker onto his scalp at particular points where the probes would be attached later. Approximately 20 probes were attached to Matthew from the top of his head all the way down to his big toe. All-in-all, Matthew was very forgiving of all the annoying probes that were now stuck to him. Matthew went to sleep a little earlier than he normally would, which was good because we were not looking forward to waiting until too late in the evening for the testing to begin. All the probes are sensors that measure things like heart rate, air flow in and out of the nose, carbon dioxide in the bloodstream, brain activity and they even measure muscle twitches caused from REM during sleep (rapid eye movement sleep).

Matthew uses wires as a substitute for hair

As I couldn’t sleep for most of the night ( I prefer my own bed), I watched Matthew’s machines. He did sometimes go out of the acceptable limits for him to pass the sleep study, but mostly due to Matthew wriggling too much.

We won’t know if he has passed the test for another fortnight until the results have been reviewed and assessed wholistically. I know that we all want him to pass the test, but we know that Matthew will pass it whenever he is ready. Still, fingers crossed.

Pam, September 10th, 2009, 0030h | Category: Uncategorized | Comments (2)

Well the time has come for Matthew’s sleep study. Tonight, both Matty and Mum will be sleeping at the hospital in the hopes his supplemental oxygen can be turned off at night, finally releasing him from that set of tubes.
It will be at least a fortnight until the results are back, so Matthew will have to remain on the oxygen bottle at night until then. I will give you all an update tomorrow on how both Matthew and I slept, but until then, here is a picture of the handsome little boy taken this morning.

Ready to go to the hospital for my sleep study!

Pam, September 8th, 2009, 1537h | Category: Uncategorized | Comments Off