June 25, 2013

Maybe Baby: A Journey Into The Unknown


Baby #2 - we want one - we love the first one so much we want to have another one.

It was always in the plan - we wanted 2 kids, so they would have someone to play with, someone to compare experiences with, and someone to lean on and look after when we are both gone. We didn't want any more than 2 kids, because we didn't have enough bedrooms or a big enough car to have any more than 2 kids. And quite frankly, my sister has 3 kids, and she is ALWAYS busy, taking them to one place or another. She's a full time stay-at-home mum, and needs to be with her busy kids. Unfortunately, we can't afford for me to be a stay-at-home mum, especially if we wanted more kids! So, 2 kids it is, or at least, it was part of the plan.

But since discovering my little genetic defect, which caused all the dramas that was 2012, having another child became that much harder.

We had a few options:

1. We could take a huge gamble, fall pregnant naturally, and hope for the best. We have a 50% chance of having a child without the genetic defect, and a 75% chance of having a healthy child.
2. We could go through IVF and genetic screening to give ourselves a 97% chance of having a child without the genetic defect.
3. We could pray for my body to mutate the genetic defect out of my system.
4. We could give up on the idea of having more kids.

All of these options left our hearts aching.

Morally, we couldn't go through with Option 1. We didn't want to take the gamble and end up with another child with the genetic defect. Fact is, if the child is female and born with the defective gene, then our daughter will simply be a carrier and live a healthy normal life like myself. When the time comes for her to have kids, she will have to go through the above options. And then, you look at the facts again, and if we have another male child with the defective gene, he will have to go through the same horrors Sean went through in 2012. Just because Sean sailed through everything with flying colours, this does not guarantee an equally easy journey for another child faced with the same challenges.

I suppose you could say that we still had a 50% chance of having a healthy child, and that the gamble paid good enough odds for us to take. But knowing our luck, we would most likely end up putting another human being through all the pain and suffering that we have gone through, and since we had an option to stop the proliferation of the defective gene, we chose to bypass Option 1. And trust me, one bone marrow transplant is enough for anyone, ever.

And, well, Option 3 was a fanciful thought. Actually, more facetious than fanciful.

And Option 4 just left me in tears. Floods of tears. An inconsolable sobbing mess.

So, in the end, we went with Option 2.

For those not into acronyms, let me spell it out for you.

IVF doesn't just stand for In Vitro Fertilisation. To me, these 3 little letters spell "It's Very Frightening". IVF IS a very frightening experience. And it's also Invasive, Vexing and Frustrating.

To anyone who had no trouble falling pregnant and staying pregnant and go on to have a successful birth of a healthy baby, the thought of having to undergo IVF is very jarring. We had no trouble falling pregnant with Sean. To be honest, Sean was a happy little accident; he was the result of one night of fun after weeks of being too busy planning our wedding (and other family dramas). We always planned to have children; we'd just hoped to get through the wedding before trying for a baby. Our GP at the time was hugely surprised by our blessing - he deemed me too unhealthy to fall pregnant so easily without any medical intervention - I was too overweight and eating too much junk, whilst still partying like it's 1999.

The invasive nature of this whole clinical procedure - and it is all very clinical - is also hard to handle. There are needles and needles and more needles, and then there are tablets that you have to insert *up there*. And that's not all. There are regular blood tests, to make you feel even more like a pin cushion. And regular internal ultrasounds. Yes, internal. That means the sonographer has the task of jamming, *up there*, a long hard rod with cold gooey gel and wriggle it around like it's nobody's business. Oh, and trust me, this is still not the most demeaning thing. The doctor and the scientists have to somehow get the lovely little eggs out of my ovaries, so I get to sit in a chair with my legs spread from here to there, while they insert tubes up there to suck down the precious little eggs. And yes, Jonathan has to *go* into a cup.

This is all so romantic.

The worst thing? Trying to hold off on doing a poo in the days after the doctor and scientists collect the eggs. Because if I let my bowels move, I am likely to fall into a foetal position on the ground, in so much pain and agony that I will not be able to stand up again for hours. Oh yeah, that's happened too. I pooed, I stood up, I took 12 steps, and I collapsed. It took over 24 hours before I could walk again.

Another horrid thing is what happens after you insert the tablets *up there*. The nurses tell you to do it at night, and you have to lie down for at least an hour afterwards to help with the absorption. Too much information? That's not the horrid part. The horrid part is this - "the tablets will cause a bit of discharge, so please make sure you're wearing a sanitary pad". Too much information??? NOOOOO, I haven't even gotten to the good bit yet. The amount of discharge is, in fact, just a bit. A LOT of a bit. The first night I used the tablets, I thought a small thin panty liner would do the trick. Wrong. I woke up thinking I'd peed myself. My underwear was soaked.

Sayonara, dignity.

With all the added hormones and stress, the whole thing can seem very vexing. The 2-hour round trips to the city to get blood tests between 7am and 9am on the days when I'm not working (drive 50 minutes to the city, spend 15 minutes trying to find a parking space, 10 minutes to have some blood taken, then drive 50 minutes home). The 6am wake up calls on the days I am working, just to make it to the clinic before work.

And last, but most certainly not the least, is how frustrating the whole process is. The waiting. And waiting. And waiting. You want to just get on with it, but your body doesn't listen to you. Things happen when they happen, they say, over and over again. Nothing can be done to speed things up. You just have to let nature take its course. It is so utterly frustrating. The endless waiting. Just awful. Excruciatingly so.

**********

We officially started Project Baby 2.0 on 1 August 2012. We had been in discussions with a lot of different people leading up to this point, in particular to the wonderful Genetics team at the Sydney Children's Hospital, and had felt so supported and confident going into this whole thing. We had received so much information about IVF and genetic screening, so we felt knowledgeable going into discussions with a specialist. Our first appointment with the doctor was arranged, and we sat down and listened to him for an hour, describing the whole process to us in great detail. We were given a bunch of information to take home and read and digest. That hour felt like half a day, and we came away feeling a bit overwhelmed and a bit less confident.

We paid our first visit to The BabyLab on 3 September to meet with the geneticist, who went through a lot of the information that the doctor had gone through. There wasn't anything new or confusing in that information session, and we returned a couple of days later to undergo a huge day of interviews and blood tests. We met with a few of the nurses, and then we met with another scientist to go through all the information again. It was a very long day of meetings which left us feeling drained.

Jonathan returned to The BabyLab by himself on 10 September for his Andrology appointment. This was the nice way of saying he had to *go* into a cup.

Then there was nothing to do but wait. I had to wait for the start of my 3rd cycle after these tests before The BabyLab was ready to hit the Go button.

Three months later, I was back at The BabyLab to collect the huge stash of drugs that would stimulate my ovaries and produce a plethora of eggs. It was Christmas Eve. Jonathan learned to load the needles and inject the shots into my buttocks. For 2 weeks, every morning, 2 needles just after we woke up. Good morning to you too, honey. Every 2nd morning, I returned to The BabyLab between 7am and 9am to get blood tests and internal scans.

On 3 January 2013, we were given the good news - to go ahead and inject the trigger medication, that will help the ovaries to release the eggs. We returned to The BabyLab on 5 January for the egg and sperm collection. Due to the position of my ovaries, I was given the option to go under a general anaesthetic so that the collection would be more comfortable and less traumatic. Ahhhh... sweet sweet drugs. I was glad to take the general, as I was in quite a bit of discomfort afterwards.

Without warning, on the morning of 6 January, some 26 hours after the procedure, I crumpled into a heap on the ground, in so much pain I couldn't stand, straighten up or walk. It was frightening, to say the least. I didn't know why I was in so much pain. As it turned out, the doctor and the scientist were quite aggressive during the egg collection, to ensure the maximum haul possible. We were to find out much later that a small number of women do experience the kind of paralysing pain that I felt.

It just would have been really nice to have some sort of warning. It honestly felt like my uterus imploded.

We were given the good news a few days later. 11 eggs were collected, and 8 of those were fertilised. 7 of those continued to grow, and our hopes of only needing to go through one round of IVF soared. The good news? The scientists did end up having something to test. ONE embryo was suitable for genetic testing.

One, out of 8.

This news was huge blow to us. The doctor suggested another round of IVF, and have this one embryo frozen for the time being. Freezing this embryo would mean that the scientists could do the testing in one hit, with hopefully something from the second round. It would also be a cost reduction to us to "batch" up the testing. We didn't really have to think about this for too long - we pretty much agreed straight away that this was the best cause of action.

More waiting ensued. We weren't able to go again for another 2 cycles. The waiting nearly drove me mad.

Round 2, and I asked every medical staff to not tell me any stats. I didn't want to know how many follicles they could see in my growing ovaries. I didn't want to know how many eggs were collected. I simply didn't want to talk about anything that would get my hopes up about this round. I was so keen on these stats in Round 1, and having been told how great I was doing for someone my age, and how awesome it was that the scientists and the doctor were able to collect so many eggs, and how amazing it was that so many of the eggs were fertilised, it was heartbreaking to end up with just one embryo that was suitable for testing. I didn't want to get my hopes up, and I thought I made myself very clear to all the medical staff of my wishes.

Unfortunately, my requests and wishes were not respected. But that's another story.

The day of the egg collection came, and I was prepared for the ensuing pain, but thankfully it wasn't as bad as Round 1. 9 eggs were collected, with 5 fertilised. We netted another ONE embryo for testing.

Two rounds. Two embryos. And this is before testing.

Of the 2 factors we were running out of - being time and money - we'd run of money. We couldn't afford to do another round of IVF, so we gave our permission for the two embryos to be genetically tested.

More waiting, and on 3 April, we got the news we were hoping for. We had ONE embryo that was 99% SCID free and 95% chromosomally sound. An almost perfect little bunch of cells.

Again, we were warned that there was no guarantee that this almost perfect embryo would result in a successful pregnancy. And we had to wait some more before the transfer could happen.

**********

I have always considered 25 June to be "Half Christmas". It's exactly 6 months to Christmas Day, one of my favourite days of the year. And with such a large family these days, immediate and extended, it's also time to start thinking about Christmas presents.

Today is "Half Christmas". And our present for "Half Christmas" this year was getting me pregnant.

The transfer happened earlier today. We went to The BabyLab and signed a few more forms, and got taken into the clinic. We met with the scientist and were told that our almost perfect embryo, our only hope, our Magic Bean, had been thawed. She told us that The BabyLab had a rating system, and any thawed embryos that scored below 60% would be deemed unsuitable for transfer. She went on to tell us a few other things, but we were now focused on what Magic Bean scored. Our almost perfect embryo, our only hope, our Magic Bean scored 100%.

The doctor arrived, and we walked into a theatre room. I sat up on the chair, and spread my legs from here to there. Jonathan held my hand as the doctor insert a tube *up there*, and in a matter of seconds, we watched with amazement as a little puff of bubbles was deposited in my uterus.

And then it was all over.

Everyone left. I got dressed and we left The BabyLab. Perhaps for the last time. And we came home.

And all we can do now is wait.

**********

In life, there are no guarantees. In life, there are no absolutes. (Except for death and taxes.) That's what makes life so interesting. We have now done our best to realise our dream of becoming a family of four. Now it's up to Magic Bean to decide whether he wants to join us, and make us a family of four.

My follow up blood test is scheduled for 5 July. That's when we'll find out whether Magic Bean has "taken".

In the meantime, I wonder how many home pregnancy tests I can pee on to keep me from going insane?!

January 8, 2013

20 Things A Mother Should Tell Her Son


I saw this today, and want to repost it here for Sean. One day, little man, I will show you this list, and hope you will take heed.

1. Play a sport. It will teach you how to win honourably, lose gracefully, respect authority, work with others, manage your time and stay out of trouble. And maybe even throw or catch or kick.

2. You will set the tone for the sexual relationship, so don't take something away from her that you can't give back.

3. Use careful aim when you pee. Somebody's got to clean that up, you know.

4. Save money when you're young because you're going to need it some day.

5. Allow me to introduce you to the dishwasher, oven, washing machine, iron, vacuum, mop and broom. Now please go use them.

6. Always treat people with the respect you wish to be treated with.

7. Don't ever be a bully and don't ever start a fight, but if some idiot clocks you, please defend yourself.

8. Your knowledge and education is something that nobody can take away from you.

9. Treat women kindly. Forever is a long time to live alone and it's even longer to live with somebody who hates your guts.

10. Take pride in your appearance.

11. Be strong and tender at the same time.

12. A woman can do everything that you can do. This includes her having a successful career and you changing nappies at 3 AM. Mutual respect is the key to a good relationship.

13. "Yes ma'am" and "yes sir" still go a long way.

14. The reason that they're called "private parts" is because they're "private". Please do not scratch them in public.

15. Peer pressure is a scary thing. Be a good leader and others will follow.

16. Bringing her flowers for no reason is always a good idea.

17. It is better to be kind than to be right.

18. A sense of humour goes a long way in the healing process.

19. Please choose your spouse wisely. My daughter-in-law will be the gatekeeper for me spending time with you and my grandchildren.

20. Remember to call your mother because I might be missing you.

January 1, 2013

Welcome, 2013!


Good riddance, 2012!

Thank goodness we will never see 2012 ever again. It was a year full of difficult challenges and incredible heartache. There were some joyful moments too, and we are certainly hoping for a year full of joyful moments and events.

Not only did we face our own incredible SCID journey in 2012, we also suffered the loss of our friends' tiny little man, Lucas James, who was born sleeping at 28 weeks. Our darling friends Lissy and David had been our rock solid support team during Sean's hospital stays, so it was utterly devastating when we learned the shattering news. We wish Lissy and David the very best life has to offer in 2013 and beyond, with Baby Boy #2 due in late April 2013.

In years past, I've made new year's resolutions that I've not kept, or ones I knew I wouldn't be able to keep. However, in light of everything we faced in 2012, I thought I would make a small list of resolutions that I fully intend to keep throughout 2013.

1. Be happy.
2. Be healthy.
3. Stop sweating the small stuff.
4. Read more.
5. Write more.
6. Learn about different cuisines in Sydney.

No. 1 will force me to focus on what is good in my life. I have a great life. I have a fantastic husband, a now very healthy 2 year old son, a job that I love mainly because of the awesome people I work with, a roof over my head, food on the table every day, and clothes on my back. I need to focus on the positives, and try to stop focusing on the negative.

No. 2 will hopefully get me off my butt and get back into some sort of exercise. The past 12 months has seen me drop off my exercise regime, and my body has suffered as a consequence. Jonathan has too, and we both now need to lose a bit of weight and start living more healthily, especially since we have a very active 2 year old to chase after!

No. 3 will force me to stop dwelling on the crap that the Evil Witch continues to throw at us. I have to remember that nothing will ever make her truly happy, or at least happy enough to leave us alone. She will always complain about something, and no matter how much we do, we will always be the bad guys. We will do the bare minimum to keep the situation civil, and that's it.

No. 4 will hopefully see me read at least 20 books this year. In about September last year, I started reading a bit more than I had all through 2012, and I found I had missed reading. A lot. In the last few weeks of 2012, I devoured The Hunger Games series. I read Catching Fire in 48 hours! I've started reading the Jack Reacher novels by Lee Child, mainly because Jonathan was interested in reading this series before we saw the film.

No. 5 will hopefully see me blog a little more frequently in 2013. I dropped off with the blogging once Sean hit Day +100, as we were finally able to socialise with people again and return to the routine we had prior to Sean's diagnosis. So, many apologies for choosing to live life and not write about it! I will try to do weekly updates this year.

No. 6 will hopefully see us dine in restaurants all over Sydney in our pursuit of good food in different cuisines. SBS has been showing the Food Safari series again, and it got me thinking about all the different cuisines that are available in our wonderful city. I'd like to able to know where to take our overseas visitors (especially my uncles and aunties and cousins) to sample all sorts of different and exotic foods. Sure, we know where to get good Chinese food, and we know a few good Japanese places, and we are seasoned visitors to the Sydney Fish Markets for fresh seafood, but as far as any other cuisines are concerned, we have no idea. So the plan is this: once a month, we select a cuisine we would like to sample, find a restaurant that has some authentic dishes, and go and eat good food. We have enlisted some good friends to join us already, and to be honest, the more people who come along to The Hills' Food Safari, the better, as we will be able to sample more food with a bigger group of people!

Six simple resolutions. Shouldn't be too hard to keep, right?

Wishing you all an amazing 2013, and hope this year is good to you too.

December 24, 2012

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!

December 5, 2012

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.

September 7, 2012

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!!!

July 26, 2012

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!

July 12, 2012

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!!!

July 5, 2012

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!

July 4, 2012

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!

July 3, 2012

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!!!

July 2, 2012

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.

July 1, 2012

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.

June 30, 2012

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.

June 29, 2012

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.

June 28, 2012

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.

June 27, 2012

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.

June 26, 2012

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.

June 25, 2012

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!

June 24, 2012

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.