Merry Christmas!

2012 has undoubtedly been one of the most challenge years we have ever faced.

On 5 January, 4 days after Sean's 1st birthday, we were rushed to the Sydney Children's Hospital Emergency Department for scans and treatment for Sean's suspected pneumonia. Further tests resulted in a diagnosis of Severe Combined Immunodeficiency, a genetic disease that we had never heard of, let alone knew what treatment plans were available. The only cure, it seemed, was via a bone marrow or cord blood transplant. Our wonderful medical team embarked on a worldwide search for compatible donor, and one was quickly identified to be near-perfect. Our brave little man had the unenviable task of tackling an aggressive course of chemotherapy, followed by the stem cell transplant, before fighting his way down the long road to recovery.

If we thought the hospital part was tough, we weren't expecting how much harder it was to be at home after we were formally discharged. For much of this year, Gloria and Sean were in "quarantine" to prevent Sean from contracting any illnesses that his immuno-suppressed body would not be strong enough to fight. For much of this year, Sean was prescribed medications to keep the germs at bay. The isolation was debilitating for us, but we persevered and were rewarded with only ONE hospital readmission. The doctors had warned us that typically, transplant patients bounced in and out of hospital post formal discharge, with the first readmission typically after the first 2-3 weeks at home. In Sean's case, he was home for almost 3 months before a glitch landed us back in hospital for a short spell. Needless to say, the doctors are surprised and totally delighted with Sean's resilience and speedy recovery.

Our little wonder is today a picture of glowing health. No longer requiring medications, Sean is an active, inquisitive, playful, lively, loving, cheeky, funny little boy. He is showing no ill effects from the lifesaving treatments from earlier this year, and aside from being a bit on the skinny side, Sean is your typical almost-2-year-old. We are truly blessed to have our strong little man in our lives.

The year has been a bit of a blur for Jonathan and Gloria. Jonathan continues to chip away at work, leading his small team in IT Product Support. Unfortunately, the much anticipated professional development opportunities that were discussed last year did not eventuate this year. However, there are some interesting work opportunities in the not too distant future, which we are both quietly excited about. Gloria had to delay her return to work by 12 months, and fortunately, her managers have been very understanding and helpful. With Sean given the all-clear by the doctors to be enrolled into day care, Gloria will be back in the workforce by mid January 2013.

This year wasn't without some fun moments. We went away for a short break to Canberra for Floriade (an annual flower and entertainment festival). We also spent a weekend at Wiseman's Ferry (about 2 hours north of Sydney) for our friends' beautiful wedding. We enjoyed a wonderful week with Jonathan's parents, who visited us in November. We caught up with lots of friends throughout the year, and saw many more at Gloria's recent 40th birthday party. And Gloria's has especially enjoyed hosting her Mothers Group mums and bubs for afternoon tea every Friday once Sean was given the all-clear to mix with the general public.

We are hoping for a much more relaxed 2013, and now wish you and your family a very Merry Christmas and a safe and happy New Year. May 2013 be good to you and yours!

Day +253: DRUG FREE SEAN!

See these?
All of these?
And other bottles like these???



All gone.
As of today, Sean is off all medications.
335 days since he started taking daily medications, Sean is now drug free.

Best. Birthday present. EVER.

Day +164: Good Riddance, Central Line!!!

From this...



To this...



It's gone!
It's gone!
IT'S GONE!!!

Our son has finally returned to his natural state. No more ugly plasticware anywhere on his body.

YIPPEE!!!

Day +121: Nasogastric Tube, BE GONE!

From this...



...to THIS!!!



It's gone!
The ugly yellow tube is gone!
The pesky tube that caused so much trouble is gone!
Gone!
Gone forever!

My beautiful boy with his beautiful face is no longer adorned by this awful ugly plastic tube.

HIP HIP HOORAY!!!

One tube down, one more to go. I can't wait till the doctors finally remove the central line. I hope it won't be too much longer.

Good riddance, ugly yellow nasogastric tube! Be gone, you awful bane of my existence! Hallelujah!

Day +107: Deisolation!

Word of the day: Deisolate.

de·i·so·late [dee-ahy-suh-leyt]

verb (used with object), de·i·so·lat·ed, de·i·so·lat·ing.

To remove from isolation.

It's official! Day +107 and about bloody time. WOO HOO!!!

Day +100: We Made It!!!

We did it!
We made it!!!
100 days since transplant!
Woop woop!

This is a major milestone for us. At Day +100, we are now officially "out of quarantine". This means a bit more flexibility and scope for me and Sean as far as where we can go, and although we still have to be vigilant about staying away from sick people, Sean is now to mix with the general public again.

All in all, we were blessed with the smooth road that Sean's been on since we were discharged from the hospital post transplant. We had only ONE return visit to hospital, very late in the piece, and there were no signs of Graft Versus Host Disease since transplant, which was amazing. We are constantly reminded by all the doctors and nurses that most BMT kids bounced in and out of hospital on repeated readmission post transplant, and all suffer from some degree of GVHD. But not our boy. Our little man is a superhero!

Day +99: See Sean Eat!

After the horrendous day we had yesterday, I wanted to focus on something good today. And Sean was happy to oblige.

The boy ate. And ate. And ate some more.

It was a sight to behold. That fussy child we had been dealing with all these weeks vanished. In his place was this ravenous child, who ate everything that was put in front of him, and more!

Sean's appetite was back with a vengeance. And I was so glad to see it. At one point, I wondered who this hungry child was and what he had done with my fussy eater of a son?! The answer: this hungry child ATE the fussy eater.

The fact that Sean was now eating well again put me in a good mood, and I set about doing the things that didn't get done yesterday with a smile on my face. We went out to the shops to buy a few things from Big W, picked up some groceries from Woolworths and got some fresh vegetables from Golden Banana.

A bit of a nothing day was had otherwise. But wait. Tomorrow is a HUGE day for us. One more day to go!

Day +98: 9.30AM is NOT Midday!

Why do we bother making an appointment to see a doctor when the doctor is NEVER on time?

Seriously, Dr Barbaric is the world's worst time manager I have ever had the displeasure of meeting and/or working with. Of all the times we have had to see her for Clinic, she has been on time less than 5 times. LESS than 5 times. Every other time, we were made to wait for up to 90 minutes to see her.

And today was no exception. But today was the worst experience of all. We didn't see Dr Barbaric until nearly midday. Two and a half hours AFTER our appointment.

AAAAAAARRRRRRRGGGGGGGHHHHHHH!!!

Day +97: Our Big Day In

With a sigh of relief, I know the light at the end of the tunnel is getting brighter by the day.

Unfortunately, someone forgot to remind the little man to just hang in there. Sean slept poorly overnight, waking a few times. Jonathan and I took turns to try and resettle Sean, who would fall back asleep for 20 or so minutes before waking and needing to be comforted again. At 5am, we decided to bring him into our room. We really should have done it a lot earlier.

Once in the safety of our arms, Sean slept. Soundly. As did I. Too exhausted to try and keep up the façade of having a morning routine, Sean and I continued to sleep until 8.45am.

As if the extra sleep was just what the doctor ordered, Sean didn't fight with me during meal times today. He continued to eat well, albeit slowly, but we were learning to take things one at a time. For now, if he was eating, we didn't mind the slow pace.

I wasn't up to doing much during the course of the day. The disjointed sleep was really wreaking havoc with my body, so I chose to spend the day indoors with Sean. My only achievement today, besides feeding and watering the little man and keeping him happy and occupied, was making a huge pot of potato and leek and bacon soup. Wow. So tasty! I was very impressed with my efforts!

We have Clinic tomorrow. We will be seeing Dr Barbaric tomorrow as Dr Trahair is away. Dr Barbaric is notorious for being late, so here's hoping we will be seen to as close to our appointment time as possible.

Day +96: Sean Is Eating Again!

18 months ago, we were holding a brand new baby. Today, that baby has turned into a toddler.

A toddler who is full of life, and giggles, and smiles, and cuddles and kisses.

A toddler who is full of mischief, and cheeky glints in his eyes.

A toddler who is full of adventure, and energy to climb on to all of our furniture.

A toddler who is full of wriggles, and just won't sit still.

And today, Sean is a toddler who is full of food, and is eating so much better again.

Day +95: Blissful Pyjama Day

Can I say again how much I love blissful pyjama days?

We did absolutely nothing today.
All day long.
Nothing at all.
We stayed in our pyjamas all day and did nothing.
Nothing at all.

If you were to look up the definition of "bliss" in a dictionary, you'd most likely find a picture of us lounging around in our pyjamas.

Oh, all right, that's a lie, a picture of us in a dictionary, but you get my point.

Day +94: A Much Better Day

TGIF!!!

Today was a much much better day. Sean was feeling better, behaving better, and eating better. I was so thankful for this lift in his mood. I wasn't sure how much more of his bad moods I could take.

Sean wasn't so clingy today, and was actually able to play by himself and exploring the wonders of his toys without getting upset with the littlest setbacks. I was actually able to get on with the things I needed to do without having to carry a baby on my hip or having a pair of hands tugging down my tracksuit pants.

Not only was Sean in a better mood, he was also eating a lot better. Sean ate faster, and the portions of food were bigger too. And he discovered a new love - Tiny Teddy biscuits. As a reward for eating his meals, I gave him 4 to 5 Tiny Teddies as a treat. And Sean loved them.

Day +93: Everyone Out Of Sorts

When will things go back to normal?

Everyone in our house was feeling out of whack. The only explanation I could come up with was that our routines were out of whack after our week in hospital.

We had a really bad night last night. Sean woke just after midnight and refused to go back to sleep. Whereas he would have gone back to sleep after a bit of a pat and a shush, Sean was wide awake, and no amount of comforting could resettle him.

Jonathan and I took turns trying to get Sean back to sleep. 2 hours later, with Sean still awake, we made the executive decision to disconnect the water pump and brought him into our bed. Sean promptly fell asleep, and stayed asleep until 9.30am.

Poor Jonathan. He still had to get up to go to work, which meant he got barely any sleep. I on the other hand stayed in bed with Sean until he was good and ready to get up.

Day +92: The Adults Are Weary

The past week was hard. And things threatened to get a bit harder today.

Both Jonathan and I were feeling the pinch. We were both run down, and fatigued, and hoped we weren't getting sick. Jonathan woke with a sore throat and a bit of a cough, and I felt so strained and limp all day long. I was not in the mood to fight Sean through his meals today, so I tried my best to remain calm while feeding him.

It took what little patience I had left to remain calm while I coaxed small amounts of food into Sean. It was so frustrating; the time Sean took to swallow each mouthful of food would vary between 3 minutes to 5 minutes, by which time the food would turn to complete watery mush. Often, the food would drip out of the corners of Sean's mouth, which was disgusting. I was growing ever more resentful of Sean's refusal to eat his food in a timely manner.

I was so fatigued by afternoon that I literally fell down on the couch and couldn't keep my eyes opened. Fortunately, Sean was happy to play by himself and watch the children's shows I had put on the TV, allowing me a 20-minute kip. Unfortunately, by the time I woke up, a headache had made its way into my head.

There was a bigger headache waiting us in our mailbox.

Day +91: Back to Hospital for Clinic

After spending a week in hospital, we had to go back for Clinic. I will never know why we had to go back.

We arrived at C2N at 8am, and the nurses all asked after Sean. They all asked when we were discharged from hospital, and when I told them "7pm last night", they all shook their heads and wondered why we were asked to be back in Clinic today.

No one, least of all me, understood why we had to come back for Clinic today, especially since we had been in hospital for a whole week, being reviewed by the same doctor we were seeing today.

All I could do, just like the nurses, was shake my head. After all, I wasn't a haematology / oncology doctor specialising in stem cell transplant, so if Dr Barbaric felt that we needed to be back today, then so be it.

Day +90: Home Again, Finally!

We're home!
We're home!
We're home!

So long, Kid Vampire!
So long, endless hours of screaming and screeching!
So long, idiot nurses!
So long, horrible sofa bed!
So long, nasty "garbage" ward!
So long, disgusting hospital food!
So long, irritating doctors who keep us waiting for hours!

So long, suckers!

Day +89: Still Stuck in Hospital

There was no chance of going home today. And I had so wanted to be home in my own bed tonight.

Sean's haemoglobin levels were low, as were his magnesium levels, so he needed transfusions of both. The doctors wanted to keep Sean overnight for observations after the transfusions, so the revised discharged time will be tomorrow lunch time at the earliest.

Boo.

I want to go home. I want to go home. I want to go home. I want to go home. I want to go home!

If I stomped my foot and pouted, will that be enough to get us home tonight?

If only it was that simple.

Day +88: A Whole Day of Nothing

Hospitals are funny places. You lose track of time when you are in hospital. Even more so when you are stuck in an isolation room with no windows to the outside world.

Absolutely nothing happened today. Well, that's not exactly true. Something did happen today. Something good. Tonight, we found the most amazingly glorious Thai place in Randwick. Blue Monkey Thai at The Spot made the most awesome green curry chicken, ever! Our dinner tonight was sensational. Even Jonathan, who was not a huge fan of green curry, said it was amazing! It was so so so good. We now had a new favourite place to eat in Randwick.

Sean's temperature was stable and well below 38°C all day long, which was great news. The blood tests showed that Sean may be in need of a blood transfusion, but the doctors would wait for the results from tomorrow's tests before proceeding with a transfusion if required. Sean's magnesium levels were definitely on the low side, so the doctors gave him an injection to boost his levels. In light of the latest information, we were told that we would not be going home until 8.45pm tomorrow at the absolute earliest.

Day +87: Two Steps Forward, One Giant Step Back

A much better day was had today, as we all managed to get some much needed sleep.

Amazingly, Kid Vampire slept last night. Yes, he slept, at night, and pretty much through the night. The long sleep he had during yesterday must have whet his appetite for more sleep last night, and the entire ward including patients, carers and staff were grateful for the respite.

Trust me when I say that we were not the only people suffering from Kid Vampire's screaming and screeching through the night. Kid Vampire was so loud that whenever he started up his complaining, it woke all the other kids in the ward. I was not the only patient's carer who wanted to shut Kid Vampire up, and certainly was not the only person to have complained about his behaviour. No wonder his mother did not want to be seen on the ward.

It wasn't an incident-free night though, with Sean spiking a fever of 38.5°C at 4.30am, around the same time the NG tube was blocked. The nurses and I tried our very best to unblock the tube, but our efforts only made Sean even more awake than before, so after two different pumps and various flushes later, we abandoned the idea of the continuous feed and switched off the machines. After some cuddles, Sean went back to sleep and stayed asleep until 7.30am.

Day +86: Febrile To The Max!

The only word to describe the mood in our room today was febrile.

Kid Vampire screamed sporadically throughout the night. After waking Sean at 11.30pm last night, Kid Vampire stopped screaming, as if he was glad that someone else was now screaming in the ward and he could have a rest. It took me until 2am to resettle Sean, before the damn heart rate monitor alarm started ringing loudly. The peals of the alarm woke Sean again, and for the next hour, Sean cried and cried and cried. It took another hour to get Sean to calm down to the point where the heart rate monitor did not sound, and he finally went back to sleep at around 3am.

Kid Vampire started screaming again almost as soon as Sean fell back asleep, which kept me awake for some time. I was beyond exhausted and passed out for what felt like a minute before Sean woke again. The nurses who came in to take Sean's bloods woke him at 6.15am and by this point, there was nothing I could do to get Sean back to sleep. Excellent. Another night with 3 hours of sleep. A total of 9 hours of sleep over the past 3 nights. Bloody awesome.

Day +85: Will the Kid Vampire Ever Shut Up???

I had forgotten just how noisy the "garbage" ward was.

So noisy. So so noisy. And it didn't help that we were in a room next to a kid that didn't stop screaming.

That's right. The kid screamed. And screamed, and screamed some more. If he wasn't screaming, he was screeching. If he wasn't screeching, he was shouting. If he wasn't shouting, he was screaming. And it went on, and on, and on. All yesterday afternoon. All last evening. All night. And all through the night.

The kid in the room next to us has two settings: loud and off. If he was awake, which was the majority of the time, he was loud. We only experienced the "off" setting for about 3 hours today. And he was only in the "off" mode because he passed out. After screaming and crying all night, I was not surprised he passed out.

Day +84: Readmission

Almost.
We almost made it to Day +100 without incident.
Close but no cigars.
We missed it by THIS much.

Sean was readmitted to the Sydney Children's Hospital today, after he spiked a fever of 38.2°C. There were a number of factors that the doctors considered - Sean may have been sick with a virus, he may have had a bad reaction to the IVIg, or a bit of both.

Any way you looked at this, Sean was going to have to spend a couple of days in hospital while the doctors worked out what was wrong with him. Yay.

NOT.

Day +83: Hangover Monday

Another day in for me and Sean, and it seemed Sean definitely needed it.

Sean seemed a bit out of sorts today; much more clingy, and definitely a lot less interested in eating. It took forever to feed him any of his meals, and all of his boluses of milk took ages as well, as his NG tube felt like it was blocking up. It was awfully frustrating to see Sean struggle against his food. After sitting for hours on end, trying to coax a relatively small amount of food into Sean, Bad Mummy here was in no mood to comfort and cuddle him during non-feeding times.

As if he was trying to tell me something, Sean slept for 3 hours during his "nap" today. I didn't mind him sleeping for 3 hours, but it was a bit unusual for him to be down for that long.

Since Sean didn't wake until well after 2pm, there was no point heading out to the shops. We stayed at home and in our pyjamas for the rest of the day. Wherever I went, so too did my little shadow.

Day +82: Sunday At Home

I wish every weekend was like this one.

After a fun day yesterday, followed by an amazing night last night, today was a blissful day spent at home, in our pyjamas, doing nothing at all.

The rain finally cleared to a lovely sparkling sunny day, but the air was still cold and everything was still damp from the heavy rains. We could have gone out, but we decided a day in was best for all of us.

We spent the day doing as little as possible. Jonathan played his game on PS3, I played around on the laptop, and Sean played with his toys and around the both of us.

Today was blissful. I'd love more days like today, and definitely more weekends like this one.

Day +81: A Lovely Unexpected Dinner Party

We had an awesome meal with some friends today, but it wasn't who we expected.

Early this morning, we received some bad news from Charmaine about the health of her family members. Christian had brought home a cold from day care earlier in the week, and as he got better, Charmaine caught the bug and was laid low. She was just getting better and was feeling well enough to socialise today, when Sam started showing symptoms of the cold. In light of Sean's lack of immune system, we felt it best to postpone our lunch to another day.

As much as Charmaine and I missed each other, we all felt it best that Sean was not exposed to any cold or flu-like germs for the time being. We made arrangements to have lunch next weekend, and hoped everyone will be well enough by then to be in the same room.

The day was dawned cold and miserable, and it rained all day long. It was best for those who were not feeling well to stay in bed all day.

Day +80: A Whole Day of Nothing

What a nothing day today turned out to be.

Not that I minded. Well, I did, for a little while, but in the end, it was fine to have a nothing day.

With Jonathan working from the Ermington office, we were all "allowed" a bit of a sleep in. One of the wonderful things about Jonathan working from the Ermington office was that it was so close to home - his office was a 15 minute drive from home, which often meant we didn't have to get out of bed until 8am, sometimes even later.

I had wanted to go out to the shops after dropping Jonathan at work, but that meant we had to be out of bed, dressed, and Sean fed before taking Jonathan to work. That didn't happen this morning. Everyone stayed in bed for much longer than anticipated, and by the time we got dressed, it was too late to try and feed Sean any breakfast.

Day +79: Clinic Day + Early Mark!

Today had to be the quickest visit to the hospital for Clinic EVER!

I barely had time to get everything out and get Sean fed and watered before we were given permission to leave. It looked like we were finally getting these pesky hospital visits down to an art form.

We arrived at 8am, to be greeted by a pair of closed doors. The nurses were still having their morning meeting to discuss the patient load for the day, but soon, the doors were thrown open and we were ushered into an isolation room.

The nurses were super quick with what they had to do with Sean today, so we were able to get on with breakfast in record time. Dr White was quick with her examination of Sean, and before we could say "boo", Dr Trahair was in the room doing his review as well.

Day +78: A Visit from Aunty Caitlin!

Sean and I had the most lovely visit from our gorgeous friend Caitlin today!

It was so lovely to see Caitlin. It had been months and months and months since we had seen Caitlin. The last time we saw Caitlin was when I still owned the apartment in St Leonards, when she was still working for the concierge service contracted to the building. Caitlin had left that job shortly after I sold the apartment, after securing an amazing job designing high end carpets and rugs for the rich and famous.

For the past year, Caitlin had been working hard at her job, and with everyone being busy with various things, we had not been able to catch up for a very long time. The last time Caitlin saw Sean was when he was a few months old and a little lump. Caitlin had very much wanted to see Sean again, and late last week contacted us to see if we could meet up for a play date.

I had been following Caitlin's adventures on Facebook, and had seen in recent weeks that she had left the amazing job designing high end carpets and rugs for the rich and famous. Caitlin had some time on her hands at the moment, so we arranged to have her drop in for lunch and a good catch up today.

Day +77: Someone Has Missed His Cot!

Sean must have really missed having his day sleep in his cot over the past few days. Today, he reclaimed his cot and slept like a boss.

For over 3 hours. Boom!

I wasn't too surprised that Sean showed his cot who's boss. He didn't have a good nap in the cot on Friday after our big grocery shopping expedition, he was being dragged to Chatswood in the walking stroller on Saturday, and he napped in the smaller stroller on Sunday as well as yesterday, with both of the naps being short and sweet.

Even though today was Tuesday, it was still our first day after the weekend, and as with every other week, today was our "recovery day".

Day +76: A Lovely Lunch with Friends

I loved today, and I really could have more days like today.

With the Queen's Birthday long weekend drawing to a close, we were happy to be spending the day relaxing with good friends David and Kirsty. At their little boy Lachlan's birthday party last weekend, Kirsty and I tentative arranged a get together with our families and Chuck and Kyung for today, since Chuck and Kyung thought Lachlan's party was this weekend. After finally getting in contact with Kyung, we found out they were both working this weekend, so Kirsty and I went ahead with our plans to catch up.

The weather was horrendous, so if we didn't have plans, we would have been staying home all day anyway. Kirsty and I were still finalising our plans for today over the last couple of days, so she was well aware of the Barney on Saturday. I was grateful we had somewhere to go today, as I didn't feel like a day at home. Besides their fun and friendly company, Kirsty was offering cocktails and her sympathetic ear, which sounded like a really nice way to spend a cold rainy afternoon.

Day +75: A Truce & An Apology

A wise woman once shared with me her golden rule to a successful marriage.

She said she never went to bed angry with her husband, even if it meant saying she was sorry even if she thought it was her husband's fault, or letting things go when he didn't even realise she was mad.

She said she always tried to go to sleep at peace with her husband, so the next day can have its own battles, and not leftover ones from the night before.

Next year, she and her husband will celebrate 40 happy years of marriage.

Last night, I tried to do that - apologise and call a truce with Jonathan. And while we were both still a bit upset about what happened yesterday, we didn't go to sleep angry with each other.

Day +74: The Biggest Barney of All Time

Funny how one glib comment could trigger an all shouting, all plate smashing, all storming out Barney that almost ended a marriage.

The Barney was not pretty. And it happened in front of children. One of the children was old enough to understand what the heck was going on. The other child was old enough to sense there was something wrong.

It was not my finest hour. I should never have lost it like that, in front of people or otherwise. But Jonathan's glib comment triggered an explosion in me, and made me a fire-breathing monster with steam blasting out of my ears.

The seething resentment that I had been feeling was exacerbated by the comment, and if my blood wasn't boiling before, it was surely red hot now.

And all I wanted was a small lie-in. An undisturbed, uninterrupted lie-in with no one else in the bed. A bit of alone time to rest, by myself, in my bed. My time off from being a mum and a wife. My bit of "me" time. Apparently, that was too much to ask for.

Day +73: Friday Before The Long Weekend

Friday before a long weekend, and I don't want the weekend to start.

As part of the Consent Orders, we must take M for the entire long weekend if it was a sleepover weekend. That meant that instead of only having M from Friday night till Sunday night, she would stay with us from Friday night till Monday night. We were forced to agree to this condition late last year, because the Evil Witch was adamant she would not sign the Consent Orders if we didn't agree to this. I was never happy about this condition, but at the time, we were running out of money to pay the legal fees, and we were completely out of patience with the Evil Witch. So we agreed, and this weekend was the first long weekend since the Consent Orders were signed.

As was usual on a Friday, Jonathan was working from the Ermington office, so I made sure he got me and Sean out of bed early enough to get some breakfast into Sean before we drove Jonathan to work. We had not had a chance to buy the groceries and food we needed for the weekend, and the plan was for us to drop Jonathan at work, and then head to the supermarket to do the grocery shopping.

One very full shopping trolley later, we headed home. It was not easy getting doing the shopping by myself - it was a chore to get all the bags in the car, and it was a nightmare getting the bags from the car into the house, and even worse while trying to put everything away, all with a very active toddler who wanted to help. In future, I will consider buying the groceries online over doing the shopping by myself again.

Day +72: 2 Hours Late!

For much of today, we were 2 hours late. The day is now almost over, and we have only just caught up.

The pleasant surprise this morning was Sean sleeping in until 9.30am. I was enjoying my sleep so much, I had no idea it was so late by the time Sean woke and sang to himself, patiently waiting for me to go to him.

Jonathan had kindly unhooked the milk pump before he left for work, and although Sean looked like he would wake at the time, he closed his eyes and went back to sleep. I vaguely recalled Jonathan leaving for work, and when I heard Sean's singing, I knew it was later than usual, but did not realise it was so late in the morning.

Waking up at 9.30am had its advantages - I felt well rested, my body was able to function and move almost immediately (my body was now taking up to 5 minutes to "warm up" every morning before it would respond to my brain's commands to move my legs and hoist myself out of bed), and the house was a little bit warmer at that time.

Day +71: Clinic on a Wednesday

A change is as good as a holiday, so they say. Today, we had a change of routine. Today, being a Wednesday, we went to the hospital for our Clinic.

Last Thursday, Dr Trahair asked us to move our Clinic day this week to Wednesday, as he was going to be running a Clinic away from Sydney on Thursday. Given we had a week's notice, there was no problem accommodating the change of date, so we booked it in with the ward and booked Sean's usual treatments with the nurses.

At weigh in today, Sean's weight was down by 150g. Not pleasing at all. Our food struggle was taking its toll. When I raised this with Dr Trahair, he said that it was common amongst transplant patients to have little to no appetite while still having cyclosporin. Dr Trahair hoped the situation would improve itself soon enough, as he was hopeful that we should be able to start weaning Sean from the cyclosporin after Day +100.

July 5 cannot come soon enough right about now.

Day +70: Mechanics are Full of Crap!

Dear Kmart Auto,

Today, you lost yourself a customer, who will be sure to tell everyone about her horrendous experience with you and recommend they all steer clear of you.

What started off as a good experience on Sunday has now turned very sour. Firstly, I never received a promised phone call from your staff yesterday to provide me with a quote for the servicing. Then, when I arrived this morning at the pre-arranged time, the car was not booked in for all the things that needed to be done.

And then, this afternoon, when I went to collect my car, your incompetent staff came up with the biggest pile of garbage and excuses and tried to pull the wool over my eyes. All your staff had to do was own up to a stupid thing that his underling shouldn't have done, remonstrate the idiot that did the stupid thing that was clearly seen by the customer, and apologise profusely with a promise to never do it again. But no, your staff felt the need to try and explain away the stupid action with the dumbest lies I'd ever been fed. Good one.

Day +69: An Inside Day

I love Mondays.

I know that sounds odd, but I have grown to love Mondays. On Mondays, I do not make plans to be anywhere, with anyone, to do anything, at any time. On Mondays, Sean and I stay indoors, and recover from the previous week. On Mondays, I catch up on my TV watching, magazine reading (sometimes), blogging (also sometimes), and rest.

Sean too likes Mondays. On Mondays, Sean knows we are going to be at home all day long, and takes the opportunity to sleep in his cot during his nap time very seriously. So much so, that often, on Mondays, Sean will sleep at least 3 hours during his nap.

Today was no exception. Today, with the weather being so cold and miserable outside, we had a lovely day in, rugged up and resting, recovering from the busy week that was last week.

Day +68: Car Troubles

After a long week, none of us wanted to go out today. But, we didn't have a choice. The front passenger side tyre needed to be replaced, or at least have a qualified tyre specialist to look at it, as it had been getting increasingly flatter every time we drove the car. This morning, it was completely flat.

While Jonathan replaced the deflated tyre with the emergency tyre from the boot, I looked up a tyre retailer to visit to purchase a new tyre.

Jonathan did some more research after breakfast, and decided we should head to Kmart Auto at Castle Hill instead. His reasoning was that Kmart Auto was in Castle Towers, a large shopping centre that could keep all of us entertained while we waited for the tyre to be assessed. There was a chance the tyre could be patched and repaired if the puncture was only small, which would cost a fraction of what a new tyre would be.

Very carefully, we drove to Castle Hill and checked in with Kmart Auto. Glenn, the store manager, booked everything in for us and told us it would be a couple of hours. We went to the shops and wandered around for a while, with Sean happily sleeping in the pram while we had some lunch.

I found the most fabulous dumpling place at the Food Court - Lok Lok Dumpling Bar. I love dumplings, and this place offered xiao long bao - little parcels of heaven made of pork mince, encased in wonton wrappers that when steamed, created a gorgeous slurp of broth within the parcels. I loved trying to pick up the dumplings without breaking the wrapper, dipping them in a little bit of vinegar, and putting the whole thing in my mouth in one tasty bite. Of course, I would always tried to be careful and anticipate the hot broth that would inevitably spurt from the dumpling, but more times than not, the broth would burn my tongue. It was a small price to pay for eating these delightful morsels.

The xiao long bao from Lok Lok Dumpling Bar was good, but it wasn't worth the 15 minute wait while being served by inept staff. Oh well. I may give them another try, if I was ever in the area again. After all, it was the beginning of lunch time and the staff seemed new and unsure of how everything worked.

While we waited for our tyre to be fixed (yes, the puncture was small so they were able to patch it up for next to nothing), we explored the shops. Castle Towers was a very large shopping centre and we knew we wouldn't have time to look through all the shops. We went to the toy shop, Target and Kmart, and that was pretty much all we had time for in the end. Glenn called us to let us know the car was ready, so we trekked back down to Kmart Auto to collect our car.

Ever the salesman, Glenn noticed that our car was overdue a service, and asked if we'd like to book it in. Jonathan felt that Kmart Auto was our best bet, as I could wait for the car in the shopping centre, instead of being stranded at the Volvo dealership while the car was being serviced. After some discussion, and a thorough check of our warranty conditions - I was afraid that using a non-Volvo repairer to service our car would void the warranty, but upon close examination, we only needed to take the car to a qualified repairer - we booked the car in for Tuesday at 10am for a service, wheel rotation and realignment, and away we went home.

In the end, it was just as well that we took the tyre to Kmart Auto. Now we can finally get the car serviced, and I get to wander the shops at Castle Towers. Talk about two birds and a stone!

Day +67: Lachlan's 2nd Birthday Party

After such a sad week, I needed a bit of cheering up, so it was timely that Lachlan was having his 2nd birthday party today!

Lachlan is the much loved son of one of my oldest friends in the world, David and his gorgeous wife Kirsty. Lachlan turned 2 about three weeks ago, but due to some unforeseen circumstances, David and Kirsty weren't able to host the birthday party until today.

Long story short, Sydney Water decided to turn their house into a big dunny - sewer pipe in the easement adjoining their property became blocked and subsequently burst, flooding the house and badly trashing one side of the house. David, Kirsty and Lachlan spent a couple of weeks in a serviced apartment while rectification works went on in the house, and even now, a month later, they were still waiting for various things to be fixed.

Day +66: A Sad Sad Day

Tears in Heaven
by Eric Clapton

Would you know my name
If I saw you in heaven?
Would you feel the same
If I saw you in heaven?
I must be strong and carry on
'Cause I know I don't belong here in heaven

Would you hold my hand
If I saw you in heaven?
Would you help me stand
If I saw you in heaven?
I'll find my way through night and day
'Cause I know I just can't stay here in heaven

Time can bring you down, time can bend your knees
Time can break your heart, have you begging please, begging please

Beyond the door there's peace I'm sure
And I know there'll be no more tears in heaven

Day +65: A Full Day of Clinics

I know I complain a bit about going to Clinic once a week. After today, I will try my best to whinge less about our weekly visits.

Today, we had not one, but TWO Clinics: our usual morning Clinic with Dr Trahair, and an afternoon Clinic with Dr Gray. This meant we spent ALL DAY at the hospital, waiting to see one doctor or another. Joy.

The fact that we were seeing two doctors today was fine with me. I just really hated waiting around for hours until the doctors deemed us important enough to pop their heads in to the examination rooms. If Sean was a lot younger, or much less active, this would not be as much of a problem. However, there was only a certain amount of time Sean was willing to be strapped into his pram and forced to sit still before he rebelled against the restraints and got upset with me.

Day +64: Hello New Couch!

The new couches arrived today! The new couches arrived today!!! Can I get a woop woop?!

I get so excited about the smallest things these day.

The phone rang early this morning to let me know the couches would be arriving between 12 noon and 2pm. I was so excited - I was actually beyond excited. After (forcefully) feeding Sean is breakfast, I left him in the high chair while I moved things around in the lounge room, in eager anticipation of the impending arrival of the new couches. And it was then I had a small pang of panic - would the new couches fit in the space we have?!

Day +63: Sean's Food Struggle

I am so over feeding Sean.

For 2 days now, it has been a massive struggle to get Sean to swallow his food. There was no issue getting the food into his mouth. The problem laid with what happened with the food once it was in Sean's mouth. I'd resorted to timing the length of time between the food going into Sean's mouth, to when he swallowed the food. 4 minutes. Sean would hold his food in his mouth for 4 long minutes before swallowing.

In the meantime, while the food was in Sean's mouth, it was turning mushier and mushier, mixing with his saliva, and it would all start to leak out of Sean's mouth. It was a massive understatement to call this dripping food disgusting.

Day +62: The Day My Couch Went Away

Another remnant of my old life went away today. And I wasn't quite as sad as I was when I parted ways with my other belongings in the past.

I bade a fond farewell to my old couch today. I'd had my lovely brown suede couch for 5 years, and it had served me very well over the years. I'd spent many a night lying on this couch, watching TV and relaxing, and all too often, I'd fall asleep on the couch after watching too much TV and becoming too tired to make my way to my bed. Whilst it was a painful purchasing experience, the couch was fabulous.

Since moving to Denistone, it became apparent that it was too wide for the space we had, and that the frame was not as good as it use to be. The movers had to dismantle the couch to get it into the lift to move out of St Leonards, and after reassembling the couch for us, we discovered that parts of the couch was suffering from a bit of wear and tear. Jonathan and I tried our best to patch the frame, and whilst it stood up to the task of providing comforting seating for our family, it was time to move on and buy a new couch.

Day +61: A Day at the Shops

A full day of shopping was on the cards today.

To prep and prime the troops, I made everyone an awesome breakfast of pancakes, which we devoured. Everyone loves pancakes for breakfast!

We really needed to fix the taps in the bathroom, so Bunnings was our first stop of the day to return some of the things we bought last week and buy a few more spindles for the bath and the shower fixings. We also needed better covers for the taps in the vanity, and we found taller ones that should hopefully fit better. Our DIY expedition continued in earnest.

Day +60: Comforting Our Darling Friends

After comforting us through our ordeal with Sean and SCID, it was our turn to comfort Lissy and Dave.

Around lunchtime, Lissy texted me to find out if we were free for a catch up tonight. I eagerly invited her and Dave to have dinner with us, and they both accepted without hesitation.

My appointment to see my lovely dentist Dr Lee was at 8.30am, and we had planned a trip out to Costco for our big "stockpile" shopping. I headed off to Chatswood well before 8am, to ensure I arrived early and not miss my appointment. Even with the buffer, I parked outside Dr Lee's surgery at 8.25am.

Day +59: Vale Lucas James

Today, Heaven welcomed its newest angel, a little boy called Lucas James.

I woke this morning with a dull ache in the pit of my stomach. I had a strange feeling that Lissy and Dave went back to hospital late last night or early this morning. Even as we left each other last night, Lissy was experiencing contractions about 5 minutes apart. The plan the doctors devised for Lissy was for her and Dave to return to hospital on Sunday to deliver the baby, but obviously to return earlier if the pain was becoming unbearable for Lissy. As it turned out, almost as soon as they got home, the pains became much much worse, and by 2am, they knew they had to head back to the hospital.

Day +58: Unexpected & Devastating News

Dear 2012,

We need to talk.

We have had enough bad news to last us through to the end of the year. Matter of fact, we've had enough bad news to last us a lifetime. From now to the end of the year (at the very least), we want only good news. Deal?

Hugs and kisses,
Gloria

Day +57: I Can't Handle The Tooth!

Just when I thought things were looking up, there goes the tooth.

I have had so many problems with my teeth in the past couple of years. Prior to becoming pregnant with Sean, my teeth gave me the odd, occasional problem, which would go away just as quickly as the problem arose. I had always had sensitive gums, which would cause some issues for me, but as far as my teeth were concerned, aside from accidentally chipping my front tooth in 1995, they were strong and I could eat and chew anything.

After I became pregnant with Sean, my teeth started to play up. I was 15 weeks pregnant when my upper left molar started hurting, and it became so bad I had to go and see a dentist. Dr Wong was reluctant to do anything invasive, but did her best to patch things up for me. She took an X-ray which showed a crack in the molar, and she asked me to be a bit more careful about the foods I was eating, and to try my best not to crunch down on hard things using that tooth.

Day +56: Making Calls & Appointments

I felt like I spent the whole day on the phone.

I had a bunch of people I needed to calls, and after putting the task off for days, I couldn't hold off any longer.

Talking on the phone had become a chore for me. Prior to Sean's illness, I never had any problems with making or taking phone calls. I'd been known to stay on the phone for a couple of hours, chatting away happily to my friends. Since Sean's diagnosis, when I had to make what felt like 1,000 phone calls for various reasons, including letting my managers know I wasn't going back to work any time soon, I had become quite reluctant to deal with people on the phone.

If I had to contact someone, I would much prefer to send them text messages. The joy of talking on the phone had all but disappeared for me. Every time I had to call someone these days, I would think back to all those phone calls I had to make earlier this year to tell our family and friends what had happened with Sean. I would always think about one phone call in particular, made the day after Sean's diagnosis, when a supposed close friend chose that conversation to have a go at me about something that really could have waited, after she was made aware of Sean's condition and how scared and petrified I was feeling.

Day +55: Recovery Day

After the busy weekend, today was always going to be a "nothing" day.

Sean and I both needed a "pyjama day", so we spent the whole day in our jammies, chilling out and doing as little as possible. I enjoyed lots of cuddles with Sean, and we enjoyed some play time together. For the first time in a couple of weeks, I wanted to play with the little man.

I smiled often today, thinking about the lovely day I had yesterday, and got on with the housework with a spring in my step. I didn't even mind doing all the dishes in the sink, a chore I sometimes loathed because I didn't use half the stuff I ended up cleaning.

Day +54: A "Me" Day, With Adults!

I can't remember the last time I had a whole day to myself, with no baby, no nappy bag, no pram, no husband. A day when it was just me and my handbag.

I can't remember the last time I went out carrying just a handbag.

But today, I had a whole day with my handbag, and I had only me to look after. And I thoroughly enjoyed myself.

Although we had Mina for a visit today, the plans for me to be out of the house for much of the day had been in place for weeks. I was feeling pangs of guilt about not being around for Mina's first visit to the house in 10 weeks, but I had places to be and people to see. Jonathan was ever so encouraging towards me being out and about today, so I gladly took him up on his offer to take care of business at home by himself.

I love you, Jonathan Francis Hill.

Day +53: DIYers We Are NOT!

Today proved one thing - we will never be able to compete on The Block.

I am an avid fan of The Block. I have watched all but one series of The Block, and the only reason I didn't watch it that year was because we had just gotten married, we were buying a house, packing up and moving house, and, oh yes, I was busy growing a baby.

Although I am handy with a screwdriver, I am not a renovator. I know my limits, and if I had no choice, I am sure I can learn how to wield a cordless hand tool or operate a drop saw. Before meeting Jonathan, I had fleetingly thought about taking up some lessons to become a bit handier than I was - at the time, I didn't think I would ever meet the man of my dreams, and I thought learning some new handyman skills would help me look after myself better.

And then, there was a period of time after I met Jonathan that I regretted not taking those handyman lessons, when I realised he was only slight better at wielding tools than myself.

Day +52: Shopping Day!

Sean and I went shopping today. Can I get a woop woop?

After Dr Trahair relaxed the terms of isolation yesterday, I decided that Sean and I needed to go for a small shopping trip to get some new clothes for winter. Sean had outgrown all of his old winter clothes, and desperately needed a few more things to wear, especially outfits for going out. We had plenty of leggings and pants, and a couple of jackets, but no long sleeve tops. Today, that would all change.

Jonathan had arranged to work from Ermington every Friday for the foreseeable future, so we got out of bed early and had breakfast before dropping him at work. We headed straight to Macquarie Centre afterwards for our shopping extravaganza.

Day +51: Ahhh, Clinic, How I've Missed Thee - NOT!

I am growing resentful towards Clinic days.

In order to get to the hospital by 8am, we have to be up and out of bed by 6.15am. I intensely dislike getting up that early in the morning, and Jonathan intensely dislikes trying to get me out of bed. We need to leave by 7am so that we only sit in traffic for an hour, and if we leave even 5 minutes later, the trip can take 80 minutes.

When we arrive at the hospital, it can take up to an hour by the time the nurses are finally finished with what they need to do with Sean, so breakfast on Clinic days can be as late as 9.30am. We need to be at hospital as early as possible, because the nurses need to take bloods from Sean for various tests, and I can't give Sean the morning dose of immunosuppressant until the bloods have been drawn. Clinic opens at 8am and not a minute sooner. Our appointment with the doctors is scheduled for 9.30am, and if the doctors run on time, we can be done and dusted by 10.30am. This has happened exactly ONCE.

Day +50: Half Way There!

We've hit the half way mark!

Well, the half way mark for the isolation period anyway. I was a little bit excited today when I realised that we were at Day +50. So far, so good. I could finally see the tiny flickering light at the end of the long, long tunnel.

The first 50 days seemed more like 50 weeks. Some days felt like 100 hours instead of just the stock standard 24. Some weeks felt like months. But then, on the flip side, some days I'd blink, and it was all over.

Day +49: Date Night!

Date night tonight - woo hoo!!!

After last week's meltdown, I agreed with Jonathan that we needed some time out from looking after Sean and go and do something for ourselves. Most, if not all of the medical professionals I spoke to last week suggested, and strongly encouraged me to go to the movies with Jonathan and have some "us" time away from the little man. At first, I was reluctant to leave Sean alone, as he needed to be given a bolus of fortified formula at a certain time at night as well as certain medications, and needed to be hooked up to the milk pump when he went to bed, which were all too hard to try and train someone to complete the tasks. I didn't think it would be fair to give these tasks to someone else, even if the person was willing and able to perform the tasks. So I rejected the idea of Jonathan and I going to see a movie.

Day +48: A Day With Friends

Sean and I had the pleasure of spending the day with two lovely ladies and meeting a gorgeous little man called Liam.

6-month-old Master Liam is the son of our friends Alex and Michelle, and we had been looking forward to meeting Liam since he was born on 1 December last year. For obvious reasons, we had not had the chance to spend time with Alex and Michelle and Liam, so when we were invited to their house today to help Lissy plan her baby shower, we eagerly jumped at the chance to have an outing.

We arranged to meet at Michelle's at midday, and I thought it would be nice to bake some brownies to take with us. Sean circled my legs while I made the brownies, and was ordered away from the oven a number of times while the brownies baked and filled the house with their warm and sweet aroma. I love Betty Crocker's Triple Chocolate Fudge Brownies, and for extra special goodness, today I threw in ¾ cup of mini marshmallows and ¼ cup of mini M&Ms. The finished product looked amazing, and I couldn't wait to try them with the ladies.

Day +47: Happy Mother's Day!

Day +46: A HUGE Day!

What a huge day today turned out to be!

Jonathan and I decided that we needed to make a trip out to the shops today to get groceries, and since one of the things we were running low on was Nespresso coffee pods, we decided to head to Chatswood Chase for our shopping expedition.

We mapped out our shopping trip before leaving - Kmart to shop for a birthday present for Lachlan, Nespresso for coffee, Coles for groceries, and while we were doing all of this, the car would be washed at the car wash in the Chatswood Chase car park. All up, if we didn't dawdle, we should be in and out in no more than 3 hours.

Day +45: Feeling A Little Bit Better

All the tears were starting to subside. And about time too.

I was starting to get a bit impatient with myself for being so fragile and teary and overwhelmed all day and all night. I needed to pull my socks up and get on with the tasks at hand, or a swift kick up the backside. All this crying was getting me nowhere.

This morning when I woke, I didn't feel as teary as I had been the last few days. I actually felt like I could get out of bed and face the day. I actually wanted to get out of bed. And I actually felt like the blanket that had been weighing me down for the past few days becoming lighter and less suffocating.

Today, I didn't mind Sean being a little bit fussy at breakfast time. Today, I wanted to play with Sean again. And it was while we were playing after breakfast that we had an unexpected visitor.

Day +44: I'm Melting... Fast

The meltdown continued into a 3rd day, with no sign of subsiding.

I was pretty sure I knew why I was going through my latest roller coaster ride. But there wasn't anything I could do to stop this train wreck that was crashing into everything in sight.

By crying only on and off yesterday, the flood gates opened with a vengeance today to alleviate the build up over the past 48 hours. I spent most of the day crying, and pretty much everyone I spoke to today were privvied to my tears.

Today, I felt overwhelmed. Normally a rational, capable person, today, I found everything in the "too hard" basket. And my muddled head couldn't seem to find a way out of this hole.

Day +43: Too Much Time to Think

The waterworks were on and off all day long. And I was really not happy with myself.

I didn't feel like doing anything today. I couldn't be bothered trying to get anything achieved. I spent the entire day in my pyjamas. No, seriously, I spent the whole day wearing the clothes I wore to bed last night. I couldn't be bothered changing, so I stewed in my pyjamas all day long.

I was so indifferent towards everything that I didn't even have a shower today.

The highlight of the day was making corned beef in the slow cooker. Having gone out yesterday, I didn't really want to drag my sick kid out again today, considering he was supposed to be in isolation. I could have gone to the shops, if I really wanted to, as Sean was more than happy to stay in the pram and wear his mask, but there wasn't a lot I actually wanted to do today.

Day +42: A Mini Meltdown

Today was not a good day.

Yesterday, I was fine. I had a nice day at home with Sean, and a nice evening out with my friends. It was a lovely day.

Today, I woke up not wanting to do anything. I didn't want to get out of bed. I didn't want to go to the hospital. I didn't want to drive the car for an hour, to go and sit in a room for hours, and wait for things to be done. I didn't want to be a mum today.

I felt off. I felt on the verge of tears. I felt very fragile. I didn't feel like me.

Day +41: Bon Voyage, Aryn!

Bon voyage, Aryn! We wish you well on your exciting adventures during your gap year!

Both Jonathan and I were invited to join Aryn for a few drinks prior to her leaving for her year abroad - she is travelling to Eastern Europe, North Africa, Middle East/Persian region and possibly bits of Asia, and Jonathan encouraged me to go and enjoy a few hours away from Sean. I gladly took up his offer to look after Sean tonight, and he even organised with his managers to work from Ermington today, so he could be home earlier than usual.

Yes, I have a thoughtful husband. I'm one very lucky girl.

Day +40: Chuck & Kyung Came for Lunch!

What a lovely day today, even if it started off with a traumatising bang.

Overnight, I kept dreaming about eating the pulled pork we were going to have for lunch today, as I could smell the pork cooking away in the slow cooker. Sean must have had the same dreams, for he woke a few times during the night. As I wanted to bake a sourdough loaf for lunch, we got out of bed early to get Sean fed and watered.

Sean was quite irritable over breakfast, as he was tired from his broken sleep, and was very difficult with his breakfast. At one point, I walked away for a second, and heard Sean gag and throw up a small amount of food. I was standing behind Sean when this happened, and Sean's high pitched scream sounded more upset than usual. When I rounded to stand in front of Sean, ready to mop the mess, I saw why.

Sean had thrown up his NG tube. Yep, you read it correctly. Sean had thrown up his NG tube.

Day +39: Preparing for Visitors

Another day, another outing. And it was a lot easier when we were all out together.

With Chuck and Kyung visiting tomorrow, we needed to head out to the shops to do the grocery shopping as well as grabbing some special items to share with our visitors.

I spent the morning tidying things around the house, while Jonathan kept Sean entertained and kept away from me. While Sean had his morning nap, Jonathan and I sat down to enjoy some peace and quiet. We planned what we needed to do when we hit the shops, where we needed to go and what we needed to buy, and after Sean woke and had his lunch, we went to Top Ryde to grab the things we needed.

Day +38: Sneaky Trip to the Shops

We were a bit naughty today. We snuck out for a shopping trip to Macquarie Centre.

In my defence, we needed more warm winter clothes for Sean. We had plenty of warm clothes, but now that Sean was actually growing, those clothes no longer fit him. Well, not exactly ... you see, our little ape has long arms, and while the winter weight clothes we have fit his body (finally), the long sleeves are not actually covering his arms. At best, the sleeves are three-quarter lengths. At worst, they looked like short sleeves that were slightly too long.

Sean needed long sleeves to keep his arms warm, or his little fingers would become little icicles, so we were off to the shops and buy some new clothes to fit Sean.

Day +37: Mother Knows Best

I really wish medical professionals would listen to me.

I mean, who am I, really? I'm not a doctor, nor am I a nurse, but when it comes to Sean, I am his full time carer, and I know best.

And as anyone in their right minds would tell you, Mother ALWAYS knows best.

I have looked after this little boy for 16 months. Every day. For 16 months. You think I'd know something about my own son. What he likes. What he doesn't like. What he will put up with. And what will upset him to the point where he either throws every monitoring device off, or he throws up.

Day +36: More Cupcakes for Us!

We waited, and waited, and waited, and our visitors never arrived.

After making plans with Jessie to have her and her girls Tiffany and Tracy over for afternoon tea, no one came. I watched their car go out around 2.30pm, presumably to collect Tiffany from school, and then saw their car arrive back at around 4pm. As I was expecting them to pop in, I didn't jump out our front door to wave at them. Sean and I waited, but by 5.30pm, we knew we had been stood up.

Perhaps one of the girls wasn't feeling well. Perhaps they had other things they needed to do. Perhaps they forgot. Any way you looked at this, we didn't have visitors today. I was a little bit disappointed, but I was sure Jessie had a good reason for not coming over.

I did bake - double choc fudge cupcakes. Oh well, more cupcakes for me and Jonathan!

Day +35: Clinic Day!

We have finally settled into a routine of sorts.

Tuesdays and Thursday now arrive without much fanfare, but with the weather becoming colder, it was now harder and harder to get out of bed in the mornings.

The house was a flutter with a flurry of activity by 6.30am, after Jonathan's superhuman efforts to get me out of bed before getting Sean dressed and ready to head out the door. I had packed Sean's cooler bag the night before, with food for breakfast and lunch, milk and water for his boluses, as well as his cyclosporin and his water bottle, so once we were dressed, we were ready to leave.

April 2012 In Pictures

Day +34: My Busy Little Man

I seem to have developed a human shadow.

Sean's latest thing was to follow me around, all day long, barely letting me have even a minute to myself at any time of the day. In the kitchen, in the laundry, even in the toilet. The only time I didn't have a hip-high shadow was when Sean was having his nap. And it was exhausting trying to keep from stepping on my shadow, all the time.

One of Sean's favourite things to do at the moment was to snake around my legs while I was standing at the kitchen, either washing up dirty dishes and Sean's medication syringes for the umpteenth time, or preparing a meal for Sean, or preparing dinner for Jonathan and me. It made doing anything in the kitchen very hard when I had a little boy snaking around my legs. Much like a cat would do the "figure 8" around its owner's ankles, I had an 80cm tall toddler doing the same thing, butting his head into my groin or my butt every time he ducked between my legs.

Day +33: A New Couch!

We are the proud owners of a new, big, fat, lazy, slothy, comfy couch. It is delicious and yummy and screams "home" to us. And I love it!

Before you jump all over us and say "What bad parents - taking your child out furniture shopping when he should be in isolation", let me agree with you on that point. Yes, we took a calculated risk, and we did everything we could to mitigate the risks. Sean wore a mask the whole time, we went to the stores late in the afternoon, on a Sunday afternoon no less, where there were very few other customers, and he stayed in the stroller the whole time. We were at the shops for a very short period of time - the driving to and from the shops took three times as long as the shopping did.

Jonathan and I decided it was time to get a new couch, based on the fact that our couch (read: "my couch") was starting to give. The frame was sagging pretty badly at one end, and it was far too long for our living room. We really needed a couch that was no bigger than a 2.5 seater, and we certainly didn't need a chaise running off the side of the couch. We both wanted a fabric couch - neither of us ever really wanted a leather couch, and I really wanted the new couch to be much deeper than our current couch.

Day +32: Catching Up with Old Friends

Troy came for lunch today, and I'd almost forgotten how tall he was!

Our first visitor since we came home was my long time friend Troy. Troy and I met in 1999, during O Week at Macquarie University, when I was standing in the Soccer Club information marquee and he came along to sign up. We became fast friends, and even went on tour with the representative teams to intervarsity games a couple of times.

After uni, Troy moved away after joining the Air Force, but we kept in touch by phone and email. We saw each other whenever he was back in Sydney and had time to catch up, and it was always fun having a meal with Troy. When Troy left the Air Force and moved overseas to work, we lost touch for a short time, but through the wonders of Facebook, we connected again.

Day +31: A Lovely Day At Home

We had a lovely day at home.

That was it. Just a day at home for Mummy and Baby. Hanging, chilling out, playing.

With Jonathan back at work, today was the first full day I have had with Sean at home. We had no plans, nowhere we needed to be, just a whole day of being with each other, and a big timetable of feeding and drugs administration to fulfil.

It was nice just to hang out with Sean. Sure, we had plenty of that in hospital, and since we got home, we have had plenty of hanging with each other time. But a whole day of it, when Sean was being so cute and clever, that was a first in a long time.

Day +30: Clinic Days Drive Me Crazy!

I am NOT a morning person. And nothing, absolutely nothing, will make me cheerful and happy and friendly if I have to be up at 6am to get to appointments, only to be jerked around.

Our second Clinic appointment was scheduled for 8am this morning. On Tuesday, when we had our first Clinic day, we were in and out of there in 2 hours. Thinking the same would happen today, I very hopefully found a 2-hour parking spot out the front of the hospital instead of parking in the hospital to save one of our parking passes.

By the time we parked the car, my body had already been forced to be up for nearly two and a half hours. Sean woke at 5.30am and needed a few cuddles, so instead of pushing Jonathan out of bed, I got up and went to Sean. We sat in the brown chair and cuddled for half an hour, until Jonathan's alarm sounded at 6am. We both had breakfast, packed the food / medications bag and the nappy bag, got dressed and headed out the door just before 7am.

Sean and I arrived at Clinic at 7.45am, only to find the doors firmly closed! That will teach us to be early!