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It has been a long time since I have typed a blog entry. However, I felt that you should all finally know how great things are going here.
Matthew turned 3 in August and is now a very clever (and cheeky) little boy. He has a massive vocabulary and is particularly good with being able to name all of his surroundings. He is currently constructing 3 and 4 word sentences to communicate to me what he wants. He has lovely manners, saying ‘More cracker, please, ta’ in an attempt to not have to say ‘Ta’ (thanks) after getting the cracker – why do it then when you could already be eating? LOL. He is great at giving the names for objects and can even be really specific (points to cup and says ‘Coffee’, only because he can see a liquid inside).
He eats like a champion and is forever asking for more of the foods we are eating. Matthew has a lovely and varied diet, but he is becoming a little chilli crazy after eating a fair bit of our curries and fried noodles on our recent trip to Malaysia. We spent a lovely Christmas with family in Malaysia and thankfully, Matthew flew very well. We were concerned he might turn blue mid-flight due to his Chronic Lung Disease (from being ventilated for so long), so we did a short trip to Sydney in September to visit family. He tolerated the lack of oxygen really well. In case you didn’t know, sea level air is about 21% oxygen, but even in a pressurized jet there is only about 14% oxygen. This can be a big difference to a child with CLD. As with any toddler, a stress free flight came down to distraction. We had colouring books and media players, but the most distracting item was the in-flight magazine. We just kept asking him to tell us everything he could see and name it all. He did really well!
He is drinking nicely too, having about 1/3 cup of water on a bad day and a fair bit more when the temperature hits over 30°C. He is still not getting all his fluid requirements from the cup, so we still give him plenty of puree and yoghurt to get more fluids in. What we call ‘puree’ for Matthew, at this stage of eating development, is more like a thick Bolognese sauce with chopped up bits of pasta. It is not runny, but does still contain a good amount of fluid.
He has been going to developmental check-ups with both State Child Development programs and with the Centre for Cerebral Palsy, to make sure he is on track. With regards to weight, Matthew is tracking the graph line on the 3rd centile, but for height he is tracking along the 10th centile (taller than 10 percent of kids at his [corrected] age). His Cerebral palsy does still slow him down and make some tasks difficult, so with movement tests, Matthew is at a 2 year old level. He is not walking without assistance (holding onto our hands or objects), but that is due to poor abdominal strength, not a disability. With help from his therapists and the future use of devices like a walking frame and TheraTogs (special shorts that rotate his legs slightly, as he currently stands with his toes out like a ballerina), Matthew will be walking really well by the time he goes to school. I know it is much better to get the early intervention now, and use as many mechanisms to speed up the process, than it is to try and reverse a problem muscle group back into the ‘normal’ position. He recently had X-ray scans on his hips to make sure they were aligning properly. He is not yet walking and it may become an issue if he is not weight bearing on them enough. Thankfully, Matthew’s hips were always within the definition of ‘normal’ but always on the borderline. At his last scan, his hip angles appeared to be improving so he is now in the ‘normal hip development’ category. Yay!
I cannot really think of anything more to add at this point in time, but if there is anything specific that you wanted to know, just ask me in the comments.
Finally, I will leave you with some pictures of my little miracle man:
 Matty eating a Love Letter (he loves those things!)  Matty and a big smile   Playing with his toy binoculars whilst on a camping trip.
So much time has passed since the last blog entry. Life is continuing on nice and comfortably – which is nice considering all the drama that was in our lives only a few years ago. So much has happened since August too. Now, …. where to begin?
Weight: remained the same. Matthew is still holding steady around the 10kg mark. I havent had him weighed for about a month so he may actually weigh a bit more.
Language development: Wow!! Two blog entries ago, I mentioned that the doctors were a little concerned with how few words Matthew was speaking. Not anymore! I made a list a few weeks ago before a speech therapy check-up, and the list hit 50+ words. I realised that I was adding more and more each day, but it was because he was learning a new word every day. He reminds me of a parrot most days. He is repeating nearly everything I say – not said entirely correct, but still so cute. This also means I can no longer let any curse words slip when I am angry at the dog
Food and Drink: Leaps and bounds! Matthew loves to eat food all day long. It really does not matter if it’s finger food or puree, he is constantly pointing to whatever food he can see and asking for ‘Nan’ (his word for ‘more’). But the biggest leap is with drinking – No More Naso-Gastric Tube! One day, just over a month ago, Matthew decided he wanted to drink all of his fluids. After 3 days of consistently drinking, we took the tube out. It was so wonderful seeing him without the tube and tape across his face. After another few days he started pushing the cup away in his usual style, but he was still drinking, it just took a lot of effort and time from us. After a few more days, he rejected the cup completely. Then, after a good chat with speech therapy and the dietetics department at the hospital, we decided to keep the tube out but to stop giving Matthew anything to drink. Of course, we would still need to keep his fluids up so we switched to one of his favorite things – eating. He now gets his extra fluid from eating lots of fruit, yoghurt and other purees. He has even started to request a few sips from the cup occasionally. We are certain that with time he will learn to have the correct amount of fluids over the day, but we have to wait until he completely understands the reasoning behind it. Until then, we are watching his weight and nappies to make sure that he is still getting enough fluids for his body and that he is not dehydrating.
Other big milestones include us leaving him for a night with his Nonna and Poppa while Dad and I went camping for the night with some friends. It was my first night without Matthew and I surprisingly found it easy. Nonna and Poppa took such good care of him, including getting him happy with the sipper cup again. We left Matthew with them to not only get a night away, but as training for an upcoming trip that Dad and I will be taking. We are off to the USA for the wedding of a good friend and have decided to take a well deserved holiday at the same time. Matthew will be in the great care of all his grandparents, and we feel safe knowing this. However, we are a little nervous about the little monster we may return home to – he is going to get spoilt!
Finally, some photos of the little man (not that little):
 Dec 2010. Matthew tried to feed Nonna and Poppa's dog a puzzle piece.  Picture taken on the day the tube is removed. Such a cutie!  Matthew watching TV, smiling and eating a love letter wafer.  Concentrating on the TV while eating.
Well, here we are, a week out from Master Jones reaching the milestone of turning two. And oh, what a year it has been. When I look back at how far he has come in just a year, it puts into perspective just how much of a miracle he is. Here is the link to his first birthday party. Of course the doctors only seem to mention how developmentally delayed he is, but we all know just how amazing he is. Matty recently had his developmental check up and the results were confusing for both us and the doctors. The don’t know exactly where Matty fits.
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
Just being a cutie pie on a cold winter's night
….of poop! Matty finally did it – he did a poo in his nappy! At about 8pm last night, Dad and I did a nappy change and we got to find a nice little present inside. He must have been saving it for a while because it almost escaped the nappy and would have gotten over me while I was holding him. He replicated the event again at 10pm leaving another present for me to clean up before retiring to bed. By already having two bowel movements he is showing the surgical team that his bowels are ready for larger volumes of milk and so we have slowly increased the amount of milk he has been allowed, to get it back to the amounts before the surgery. For lunch today he should be taking his usual amount of 125mls and it will also be his first meal post surgery that is made from increased-calorie formula. Matthew is normally on increased calorie formula, but in order to introduce the formula to him safely, they made it to normal strength and monitored him to make sure he was tolerating it.
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.
Yes, it sounds like an unusual mix, but it’s pretty much par for the course when you’ve had an ileostomy reversal and have never passed fecal matter from where the rest of us do.
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.
Sitting here in the waiting room gets me thinking. Some say the waiting is the hardest part. I’m not sure I agree but I am starting to really notice a pattern with how it goes.
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…
In just a few hours master Matthew will be back at PMH for his stoma reversal surgery. Once again, we don’t expect any hiccups and expect it all to go pretty smoothly (that is until he wakes up and goes what’s going on in my nappy?!).
I’ll post an update a little later with word on the progress.
As you already know, Matthew coped really well with the surgery and the pain post-op, so we were transferred from the ICU down to the surgical ward. The night we had on the surgical ward was no different. They hooked him back up to the pulse oximeter just to be on the safe side, but didn’t hear a peep out of the machine (or the boy) for the whole night. He slept reasonably soundly considering the nurse came in every hour to do observations on his breathing and heart rate. I, however, did not cope so well with the nurse entering the room so often. I think at one point I had a conversation with her whilst I was still asleep. I remember saying something urgent to her, but cannot remember what I said. Oh well, I am sure they are used to over-tired parents saying things in their sleep. When the doctors came in to the ward the following morning, they were very pleased with Matthew’s progress and had already organised for us to go home that morning. That made me laugh a little because Matthew was such a sick little boy for a long time but now that he is older and bigger, he breezes through surgical procedures like they are nothing at all. The specialist surgeon that did the surgery even told us that he was amazed that Matthew did not require a throat reconstruction considering how long he was ventilated for and how many tubes would have been poked down in that time. He agreed with us that our little boy is a miracle and a fighter.
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 
Yep, we all are as of this afternoon. Young master Matthew has once again breezed through surgery with flying colours. So much so, they transferred him out of the ICU and into the surgical ward early this evening. He was originally planned to stay the night up there, but he seems to have recovered so quickly they thought they might as well send him off to the more casual ward.
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).
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