Eats first M&M

Well I didn't think he'd be able to handle an m&m but my wife thought otherwise and as today marks the start of us starting Raphael's potty training, Annie wanted to the food reward system to be something new.

He handles the m&ms well, he eats them by waiting for them to disolve in his mouth and then they are no problem for him.

The potty training on the other hand hasn't been entirely successful yet but we have only be trying for a couple of hours so far and it took our other kids a week before they were potty trained.

Eats chocolate cake for the first time

Since his doughnut triumph we have been trying a few different foods but without much success. But today he successfully manages very small pieces of chocolate cake. This is slightly tougher than the doughnuts.

Raphael eats doughnut for first time

This is the first non-pureed food that Raphael has eaten without choking (much).

He seems to have learned to masticate very small pieces of it into a puree and then he is able to swallow it

Paediatrician and paediatric intensivist

Raphael weighed in at 10.97kg today. This is a good result! His head circumference is big but he is still very short.

He was a little sick and so the paed gave us a script for antibiotics. She reassured us that his vomit in CPAP two days ago doesn't appeared to have had any detrimental effect on him.

We also talked about our concern over Raphael's speech and she gave us some ideas on avenues we could go down to ultimately improve his communication.

After the consualtion we ran into one of Raphael's intensive care consultants and we had a brief chat about his mask getting to small for him. She kindly went and got a batch of masks that were around his size but there wasn't one that was going to fit him. She said that she would contact her interstate colleagues and see if there was anything that might fit Raphael. In the mean time she gave us a maks that we can attack with some scissors to try to get it to fit.

Development and vomit

Raphael has done some new things. He is getting over his sickness finally and has been trying out a new sign and a new sound. He can now say "ooooo" and can copy us when we sign "more" although I dont believe that he knows what it means.

On another note I have somethign to complain about. As a general rule we try to feed Rapahel as much food as possible, but if he eats too much too quickly then he vomits. So it has become an art form to determine whether he has eaten too much recently. Today, recently, we decided that he had eaten enough for the time being but for the first time I can remember he wanted to eat more. We didn't want to risk giving him more and so we refused to give him anything. Unfortunatelly this made him upset and when he gets upset he can go into a coughing fit and when he goes into a coughing fit he is very likely to vomit; this is exactly what happened. So in an attempt to prevent him from vomiting, we caused him to vomit. That was so frustrating!

Paediatrician and travel help

We went through a good list of questions today with Raphael's paediatrician. Just like me she is very happy with his weight gain and general appearance. Fortified feeding is still required but tube feeding is no longer being considered (which is great news). I believe that this marks the end of the "no NGT trial" and that we can call it an outstanding success.

We are giving ourselves a great big pat on the back for all the hard work that we have done but also not forgetting to praise God for this amazing turn around that no-one predicted.

After the paediatrician appointment we went to see the guy in the hospital who manages the travel support for assisting us to travel to Sydney. We were careful to clearly explain the travel and accomodation support that we will receive from other places because we don't want to "double dip". The hospital is going to be very helpful for us financially as they are willing to cover some of our taxi trips which looked like they were going to be more expensive than our air tickets.

Final weekly weighing (10.5kg)

Raphael has been doing so well that I have decided that this will be his last weekly weighing. He weighed 10.5kg today which is no increase from last week but he has been sick and his weight is still excellent so I am not worried about this.

Mini gastro bug

Raphael had a small vomiting session this evening which looks likes he has caught the gastro bug that has been progressing though our family. My wife is the last remaining non-vomiter in the family but she is complaining of not feeling very well either so I don't know if she will last the night without a trip on the porcelain bus.

The good news is that it seems to only last one or two days so I think that he will be over it soon.

I am so proud of his weight gain (10.5kg)

He now weighs 10.5kg which is a 70g increase in the last week!

You are doing well, keep on eating son.

Wow (10.43kg)

Raphael's paediatrician is going to be very happy with him the next time she sees him. He has put on 70g in the last week.

He is becoming less and less interested in the special formula (Nutrini) that we feed him and now it is common that he takes the bottle and gives the teat one lick before giving it back to us. I can't blame him for it, it tastes terrible! One person commented "I thought it was for tube feeding only, I didn't think anyone would take it by mouth"

To make sure he is getting adequate nutritional content, we have been adding scoops of regular baby formula (S26); we have been adding it to his purées in just slightly less proportion to that recommended to be added to water. Because he is taking less fluid we are a little concerned about whether he is getting enough water. He seems happy enough and I haven't seen any signs of dehydration yet, but I will be asking the dietician about this the next time we see her.

New hearing aids and weight check (10.36kg)

I weighed Raphael today at 10.36kg. This is a milestone for him becuase he has finally weighed more than the first weight check at the beginning of the trial (10.3kg). But before I hear you cheer too loudly, this only represents a 60g gain since 9/7/2007 (10 weeks).

Speaking of loudness, we also took Raphael to Australian hearing today to get new hearing aids for him that can supply higher volume for his left ear. Unfortunately, one of the new aids was missing the childproof battery lock and so he will have to wait for that one to be repaired. The good news is that it was the right aid that was missing the lock and so he is able to wear his old right hearing aid (with the same volume), and he can wear the new left hearing aid with the enhanced volume that his left ear needs.

Another weighing (10.29kg)

Raphael has been wolfing down the food over the past few days and so we were certain that he was going to put on weight. Instead of the usual ~600g of food that he normally eats, he has been eating over 900g each day for the last three days.

He weighed 10.29kg with is a gain of 380g. He had even done a poo just before I weighed him so it is not like he was holding in a full load to make his weight look better.

weighing (9.91kg)

He has been eating well so this weight loss of 230g down to 9.91kg has come as a surprise for us. We will do some kj analysis to see if he has had reduced energy intake.

Development and weight gain (10.14kg)

Today we weighed Raphael at 10.14kg (a 60g increase from last time).

Raphael has begun cruising to more difficult surfaces of different heights. He still complains about having to do it but is willing to do it if the incentive is high enough.

He has also just managed to say Mama, it is a bit garbled but he clearly pointed to his mum and made this new sound. This is the first new sound in a long time and makes his list of sound:

• "dya-dya-dya"
• "adaadaadaadaa"
• "aiyaiyaiya"
• "mama"

Mama is English and Chinese for Mum and so we are going to claim it as two new words that he has learnt. I think that he knows that am "Dada" and that his mum is "Mama" but I can't be certain about that.

Weighing today (10.08kg)

Today his weekly weighing put him at 10.08kg which is a marginal increase of 50g since last weighing.

Also today, Raphael's Early Learning Teacher and Vision consultant visited us because Raphael could not make it to the last group with his ear infection. His teacher brought a box with her that seemed to contain an endless stream of things that Raphael found intensely interesting. Raphael showed off his ability to see and demonstrated his fine motor skills by posting objects into a box and manipulating small objects with his fingers.

Yucky ear

This morning I went to put Raphael's hearing aid in and I found a disgusting brown goo in his ear. Yes he has an ear infection and this brown goo is apparently what you get if you have grommets that allow it to ooze out. So we have more antibiotics to give to the poor lad: eardrops (sofradex) and the regular amoxycillin.

It is also weighing day again so I weighed him while we were visiting the doctor surgery and he weighed 10.03kg. This is a respectable 210g gain since the last weighing but it is still a 270g loss since we started the trial.

Sick and hot

We measured his temperature as 38.4c on two occasions today. Panandol made him feel a lot better on both occasions but his fluid intake is well down today. His home care nurse visited and she recommended that we give him some gastrolyte to re-hydrate him a bit becuase he would not drink water or his Nutrini (formula). He is not dehydrated yet but of course we don't want him to become that way so I went to the chemist and bought some Hydralyte (which is a re-hydration fluid like gastrolyte). He was happy to take 60ml of that from a 20ml syringe.

Another long paediatrician appointment

We had another 1.5 hour paediatrician appointment today. I have been quite sick and so it took all of my concentration to follow what was going on during this consultation, at one point the doctor asked if I felt ok because I had gone pale and broken out in a sweat.

Raphael had re-hydrated himself since his last weighing and he weighed in at as respectable 10.18kg in the hospital. Again the dietician and paediatrician are happy to continue the trial without the NGT for another month.

We are also going to have a third in-depth barium swallow to examine Raphael's swallowing mechanism.

During the consultation, our paediatrician said that we are brave parents because we are willing to explore how far Raphael can go without committing him to surgery. I have to say that there is no more effective way to crush someone's bravery by telling them how brave they are. But for me, the safest course of action (surgery and drugs) is not something that I think would make my son's life worth living. So my bravery is not grounded in bold confidence but rather in choosing the long term life benefit over the short term risks. This means that I need to take other courses of action to mitigate the short term risks.

Other topics covered:

• Weight gain, feeding, milk, solids and vomiting
• This last cold that he has had
• Aspiration risks and fundoplication
• Other CHARGE kids swallow development and reflux
• Fundraising for going to Australasian CHARGE conference next year
• List of CHARGE features from UK website. Notably
• Cranial nerves
• Gross motor skills
• Language skills
• Dental issues including teeth grinding
• Sleep sitting parasomnia (like sleep walking except Raphael can't balance standing up up and so he just sits up)

Here is a video of his sleep sitting:

Another weigh-in (9.82kg)

Today I weighed Raphael at 9.82kg. which is a loss of 380g. I am not entirely surprised because he has been sick, vomiting and not eating much over the last week. His appetite is still not good at the moment, so I don't know how the next week will be.

How much does he weigh now? (10.2kg)

I didn't have much hope for Raphael's weight gain today because he has been grumpy and a bit off his food and last night a home care nurse visited and we took his temperature at 38.6.

But today I was surprised by the weighing. His blanket had lost 20 grams and was only 450g but he had gained a little weight and now weighs 10.2kg, that's a 60g increase.