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.