June 28, 2008

PBMT - Day 201

Adrian had his 3rd ST session at Caritas this morning. Again, there's not much improvement on Adrian's weak mouth muscles (poor oral motor skills) since the last session in May. This session didn't run very smoothly as well because Adrian wasn't cooperating at all! He cried and just hated when the therapist was trying to put her hands around his mouth. The therapist utilized a couple of exercises/toys such as balls, bubbles & fishing game to encourage Adrian to utter some words associated with the games. Adrian enjoyed the games but he wasn't willing to say the words. He'd get mad everytime we were withholding the toys unless we heard him say it. In conclusion, the therapist found that Adrian doesn't quite know how to use his lips to pronounce. We have to find ways to motivate him and practise more using his lips.

June 27, 2008

PBMT - Day 200

Adrian has been abstained from having TCM since he had the flu on Father's day. Despite the heavy rain this morning, we arrived at the TCM clinic at 10:00 for our long due appointment. The whole appointment was a pleasant one with Adrian running and socializing with everyone at the clinic. He even went in the front desk and played with the two receptionists there, picking up the phone in the fax machine, scribbling on a piece of paper and moving stuff on the desk. When it's our turn, Adrian showed his hands/tongue to the doctor and according to the doc, he's doing ok. In the end, doc gave him 2 weeks' of TCM to clear his last bit of flu symptoms (minor cough) and we will return in 3 weeks' time.

June 26, 2008

PBMT - Day 199

Getting very frustrated taking care of Adrian these days. Not that he's not behaving but feeling very depressed at times that Adrian still acts like a baby in many ways. The fact that he still does not know how to chew and drink from a straw cup have made Mama very stressed. After the OT&ST appointment the other day, she's decided from that day on - Adrian can only drink water from a straw but nothing else (no more spoon fed)!! So Adrian only drank minimal amount of water from the straw in the past two days (as expected) and her worse fear happens. We suspect Adrian constipated... he usually does his "business" early in the morning but nothing came out today. Mama gave up and spoon fed him water and he finished 8 oz of water in less than 5 mins! At the end of the day, Adrian poo'ed and just as Mama thought her mission was a complete failure; Adrian drank more than 6 oz of water from the straw cup when Papa gave him the cup tonight. He must have liked Papa more :-( Hopefully he'll slowly get into the habit of drinking from the straw cup.

June 25, 2008

PBMT - Day 198

Adrian was supposed to have a TCM appointment today but it got canceled because Typhoon #8 was hoisted. That brought back our memory of last August that we were leaving K8N the night when Typhoon #8 was hoisted (and unfortunately had to go back the day after because of neutropenic fever). It feels so good to be staying home when it's pouring outside, most of all, Papa got half day off to spend with Adrian!!

June 24, 2008

PBMT - Day 197

Busy at DK for Physio, OT & ST appointments all happening in the morning. Adrian seems to be fairly comfortable now at the Physio session that he wasn't behaving... When asked to lie on tummy on top of the therapist to train up his arm muscles, he refused to do so after a few minutes and got up to play other stuff. Little Adrian didn't cooperate at all when taking the stairs or walking up/down a step (as obstacles). He'd just do it a couple times and then he'd go and do other stuff. The Therapist was surprised to see what used to be a shy little guy has turned into a "real" toddler with emotions! After the physio session, we headed to our next appt of the day - OT & ST session. Mama felt bad that she didn't achieve anything before coming to this OT&ST appt. Adrian still have problems on eating that he simply does not know how to chew, has no ideas how to use a straw not to mention talking! His mouth muscle is so poor that he fails everything has to do with his mouth (eating/drinking/talking). Adrian, however, behaved well at this session. He showed his tongue to the speech therapist when asked to and played cheerfully in the room while Mama was telling the therapists of her difficulties. In fact, Adrian has been a lot more verbal now than before that at least he can say a few words but it's not enough according to the standards of a 2-yr old kid. Meanwhile, another OT session will be scheduled on a monthly basis for the next two months to train up his mouth msucle. Next mixed session of OT&ST will be in 4 months' time (Oct 2008).

June 23, 2008

PBMT - Day 196

First day back to QM as a day patient at the Outpatient clinic in the G/F of Block K. Because of Adrian's recent flu dilemma, we were asked to wait outside the clinic so other kids will not be affected. The nurse called us to get in when it's our turn - First, Adrian needed to be weighted and measured. It's funny they treated him as a real "baby", he was put on a baby bench & scale for all the measurements! Next, the doctor called us and we are really pleased it was Dr Chan who was seeing Adrian today. It feels strange to see doc was sitting in front of the computer busy typing stuff. He went over the latest reports (BAEP, CT Scan & blood) with me and summarizing it on his computer. He later examined Adrian's abdomen, scrotum and lymph nodes around his neck etc. Remarks have been put on the screen about the next MIBG appointment will be due in July and CT Scan probably in Nov 2008. Little Adrian got so impatient that he kept running in & out of the consultation room. As a matter of fact, Mama was really thankful to have met some old friends from K8N at the clinic - they sure have helped her a great deal in keeping an eye on Adrian while she was busy lining up for booking our next appointment (in 4 weeks' time on July 21st) and getting drug prescriptions done. And, as Dr Chan has put it - we finally made it down there at the outpatient clinic after a year long of treatment!!!

Got doc's confirmation - Adrian officially says "bye bye" to these meds below. He will only be on Accutane from now on.

June 22, 2008

PBMT - Day 195

Other than a couple more coughs here and there, Adrian is almost recovered from his flu. While Adrian has refrained from the outside world this past week, the coming week will be a busy one that he'll resume his normal activities such as going to QM for his monthly appointment (with the Oncology Doc.), DK for physio, OT & ST on Tuesday and to Central for TCM appointment on Wednesday. Just today we took Adrian out to enjoy the sun...

Here are the pictures:-

June 17, 2008

PBMT - Day 190

We followed the exact same timetable but we were not as fortunate as yesterday's to be able to leave QM by noon. Adrian is getting better today, at least he's not taking panadol anymore (perhaps should say he still has low grade fever e.g. 37.6C). However, Mama almost starved to death as we kept waiting and didn't get to see our doctor until 2pm (because they were occupied with the big half year review meeting!!!)!!! As we'd expected, doctor has agreed to discharge Adrian after examining him. The nasal fluid report also came back and in conclusion, Adrian was diagnosed with Influenza B virus! And doc reiterated that no antibiotics is needed and Adrian's immune system would fight against the virus. So we are finally being discharged and arrived home around 16:00.

June 16, 2008

PBMT - Day 189

As much as we hated to go to the hospital again, we dreaded ourselves to QM by 9:30am this morning - just before the ward round started. Adrian didn't have any temperature when taken at home but skyrocketed to 38.7C once we got there. The nurse soon gave him panadol for the fever relief. The doc soon came and examined Adrian once again... As far as the blood/urine test goes, everything seems fine with Adrian. Doc has agreed we'd have home leave again today given Adrian can still eat & play, he just acted completely normal. We will come back again tomorrow just to be safe. On the other hand, we didn't take any preventative measures lightly - Both of us have been wearing our masks 24/7 and hopefully we won't cross-contaminate with one another.

June 15, 2008

PBMT - Day 188

Spending half the day in A&E at QM would surely be one of the most memorable Father's day for Papa. Adrian was all normal in the morning but suddenly ran into a fever (38C) at around 11am. We called C6 (previously K8N) and the nurse advised us to retake the temp again in an hour. The fever persisted and we were not going to give it a chance, so we decided to bring Adrian back to QM. Because it's already past office hours, we had to wait for hours at A&E before we could head right into C6 for diagnosis. After being examined by the doc, we were told that Adrian had some viral infection and his throat was a bit red (he's probably got it all from US. Sighhh!!!). So they sent Adrian to K7N - the isolation ward!! Poor Adrian cried when the doc was trying to draw blood from his arms (no more central line) for blood culture. Urine & fluids from his nose were collected for virus testing. Luckily, we were allowed to leave for home tonight but will have to be back again tomorrow at K7N!!!!

June 14, 2008

PBMT - Day 187

Mama has been doing "playgroup" shopping for Adrian recently. We brought Adrian for a trial class this morning. The centre operated in a very open concept - other than a big open area for kids to play/dance, it doesn't has much equipments there. The class run in 45 mins and there's 2 instructors with approx. 8 toddlers including Adrian. While I saw other kids were enjoying the class very much, Adrian was EXTREMELY shy!!!! He wasn't willing to participate in the games/dance AT ALL and would always cling onto me bowing his head low!!! His whole body was so tensed that I couldn't even move his arms/legs for him. The only time he actually had his hands moving and smiling was when they were playing the ball with the parachute! At the end of the session, when the instructor was giving out stickers to each of the kids, Adrian was so scared when he had his hand out as if blood was going to be drawn from his hand. It was a big relief for him, I'm sure. He was all talking and laughing afterwards when we were waiting to get into the elevator. Guess Adrian just needed to be out more often, especially with other kids doing different activities.

June 12, 2008

PBMT - Day 185

Adrian had another session of Physio at DK this morning. Other than the normal routines, the therapist was trying to train Adrian to use the other foot to go up/down the stairs (his right foot is stronger than the left one). He refused to do so after several trials, we thought he was just too tired using his left foot all the time. Nonetheless, Adrian enjoyed his Physio session there.

Both Papa & Mama started to develop some cold symptoms in the past 2 days (Papa being the first one!). Now that we share the same bedroom with Adrian, we both rushed to see a doctor quickly and have been wearing masks at home....

June 9, 2008

PBMT - Day 182

We took Adrian to the HK Central Library this morning. Adrian is registered for the first session at the Toy Library. At each 45 mins play session, we have the privilege to borrow toys (they have up to 1,400 toys/education kits) and to use the facilities there. We got there 20 mins before the session started and then we realized we forgot to bring a pair of socks for Adrian (kids have to wear socks before getting in). So Papa went "socks" shopping in the neighborhood and luckily there's socks for sale in the library gift shop. The session flew by quickly and Adrian seemed to enjoy the experience. The play area is not as big though they do carry lots of toys in their inventory. Guess we can't complain too much since it was a free service!

We're on our way to the library - Adrian's first ride on the minibus.

June 7, 2008

PBMT - Day 180

Today marks the 180th day past transplant for Adrian which means he can now be officially off from some of the medication incl. Acyclovir & Septrin. But we are going to continue giving them to him until we get the doc confirmation on our next QM appointment on June 23rd. Initially, Adrian had his 3rd ST session this morning but it was canceled (and will be rescheduled) due to the Black Rainstorm warning issued early in the morning.

We later went out for lunch after the Rainstorm warning was off. There's a funny episode where Adrian poo'ed when we were having lunch at the restaurant. Unfortunately there's no facilities like the changing table in the restaurant and the captain was kind enough that he let us change Adrian in the bride's room. It was very funny afterall.... we felt sorry for the bride who'll be using this room!

June 6, 2008

PBMT - Day 179

We had an OT appointment at DK this morning for Adrian's motor skills assessment. However, we realized it was actually a hand-eye coordination assessment as soon as we entered the room and met with the therapist. The whole process didn't take too long and with the help of various toys, Adrian did cooperate this time. The Therapist gave Adrian marks as he played on different toys to evaluate how well he can perform. She will get back to us on the result once she's finished all the number crunching. And the good news is Adrian wasn't that far behind from the preliminary result! She suggested a few tools/toys (e.g. threading beads onto a string, playing with baby scissors and screwing/unscrewing bottles) which may help to train Adrian for the time being. Apart from the Physiotherapist, the Occupational Therapist once again concluded that Adrian is left-handed after this assessment!!!

June 4, 2008

PBMT - Day 177

Where we live now is a eight-storey building. At one point in time today, Mama thought why didn't she take Adrian out to walk up/down the stairs in our building as practice? She put it in action just before shower time and Adrian got so excited when he knew he was about to get out of the house. We've spent roughly 15 mins walking up the floors, literally "visiting" each flat on each floor up until we reached the rooftop where we had a glimpse of the tall buildings across the harbour on the Kowloon side. Both of us felt very refreshed and it's an excellent exercise to keep up with an energetic toddler, yet a good practice for Adrian in taking the stairs!

June 3, 2008

PBMT - Day 176

The wound on Adrian's chest has completely healed and he can finally enjoy a carefree bath with no more plastic bag holding the tube nor micropore tape!!! We have been looking forward to this day and today we've decided to give Adrian a shower instead of a bath. We are happy that Adrian liked his first showering experience. It's neat with no more water splashes on the bathroom floor!

Adrian is ready for the shower...

Adrian in PJ...

June 1, 2008

PBMT - Day 174

Mama had a small gathering with 12 other Sick Kids' moms this evening. It's a very special experience that we meet each other OUTSIDE of the hospital the first time (at least Mama's first time) and catch up with one another. We had a feast where we ordered more than 10 dishes of seafood plus a few bottles of beer. It feels like the hospital life all flashes back in our memories. It saddened me to learn that a few of the kids whom were diagnosed cancer around the same time as Adrian have passed away recently. They all love to hang out with Adrian at K8N that time... let's hope the Little Angels will watch over Adrian up there!!