Hi all,

Wow, wow, wow! This is all I can say about my first week home. I can hardly begin to describe all the incredible emotions I’m feeling from being home, but the most prominent are feelings of joy and satisfaction. Being in this comfy environment is awesome; there is peace and quiet, darkness at night, and comfortable things around me. Also, there is so much space here – there are regular scene changes as I’m taken from room to room, so there is no chance of boredom setting in. So, without further ado, let me tell you all about my week.

Monday and Tuesday were really quiet days for me. Sadly Dad has to go to work during the day, so I only see him in the mornings and then from the late afternoons and evenings. Before work we spend some quality time together watching CNN or catching up on the latest market movements on the ‘net. During this time I’m also fed and general cares are done. Once Dad is ready to go to work, he typically puts me in bed with Mom and we spend some time snoozing. Mom coped really well with me alone at home, and I’m so proud of her. On top of looking after me, she still managed a whole bunch of other things such as admin around my medical bills and ordered more Infatrini for me. Additionally she made appointments for me to see my OT, Speech Therapist and Paediatrician later in the week. It was really exciting once Dad got home, as he told me all about his day at work, and took over looking after me and feeding me. Later in the evening Dad disappeared to a place called gym, and after about two hours he returned looking shattered. I made a mental note to avoid gym in future, as it doesn’t seem to be an all too desirable place!

Tuesday started pretty much like Monday. Dad went off to work after spending some quality time with me in the morning, and again he seemed incredibly sad at having to leave me and Mom at home. I offered to go with him, but he mumbled something about my not having an ‘access card’. I guess my chance will still come to experience this – no need to rush it. I spent a wonderful morning with my Mom, and before blinking it was already afternoon. Shortly after noon Master Delivery (i.e. Mr Delivery for Babies, or MD4B, for short) arrived with a month’s supply of Infatrini for me. I was so excited at seeing the boxes being stacked in the dining room, as it was owing to these that I was to put on much needed weight. Suddenly my Dad appeared in the study where Mom and I were chilling; I got such a fright as I didn’t hear him coming home with his bike, revving it up the driveway. Turns out he opted to get a lift home with Robin owing to the threat of afternoon rains. Dad bathed and fed me, and then the three of us spent some time watching TV. During the afternoon Roelof came to visit me and my Mom, who would be the first of many visitors I would have during the week.

My nights are pretty chilled, with me sleeping through just about the whole night. Occasionally I have a little bit of a wobbly at 4:00am, as this is the time that I would be bathed in hospital, and to some degree I’ve been programmed to wake up screaming at this time in anticipation of being dumped into a basin of water. I guess with time those memories will begin to fade, to be replaced by happier thoughts. The big advantage of my having a gastronomy tube in my tummy is that there is no need to wake me to feed me – during the night Mom or Dad simply ‘top me up’. It is something I would recommend for anyone my age, who would like a full night’s uninterrupted sleep. Mom and Dad are not yet confident of my sleeping in my own room as yet, so I accommodate them by sleeping in the camp cot in their room. Although I’d love to be in my own room, this brings with it some of its own adventures. Beneath the raised bassinet that is at the top of the camp cot is a zipped flap that I will be able to use one day as a play pen. Most of you know my Dad well enough to know that he has to try and test everything, so this zipped flap was opened, and dubbed the ‘escape hatch’. During the night then, it is not uncommon for Shatzi to settle in under the bassinet via the escape hatch. It’s actually quite exciting, as it feels like a bunk bed! The focus of the three of us over the past few days has really been for me to implement a suitable routine, and for my Mom and Dad to a customise themselves to the routine that I’m inflicting upon them!

Wednesday was by far my busiest day so far. First my Granny arrived to visit me. After we settled down and got comfortable with cups of tea, Audrey arrived. Audrey is a clinical consultant from a company called Perryhill International, who are the suppliers of the gastronomy tube that’s in my tummy. As part of these complimentary visits, Audrey determines if the tube is settled in well, the stoma is not inflamed and just makes sure the tube is general good repair.

Granny and Audrey’s visits were soon exchanged by Bronwyn arriving. I was thrilled to finally meet her. She has been one of my loyal fans from the outset of my journey, with regular, if not daily, SMS’s to my Mom, and frequent postings to my blog. I was delighted at being held by her, and getting hugs and kisses from such an ardent fan. In addition to being showered in dollops of hugs and kisses, Bronwyn brought me the most awesome silver picture frame containing a pic of me, the day I was discharged. I also got a journal from her called ‘Baby’s First Year’, and I made Mom promise that she would place entries in it at the appropriate titles, such as my first tooth, my first haircut, etc. Dad arrived home (revving his bike up the driveway) while Bronwyn was still here so it was a great time for all the adults to catch up. The late afternoon’s idle chatter was soon replaced by my drifting off to sleep, and I remember my tummy being filled with food via my tube.

The evening brought with it more excitement, as Nina, Nadene and Gene came to visit. Lots more hugs and kisses as I was passed around. Plenty of photos were taken and I was presented with more beautiful gifts in the form of clothes and a fluffy teddy bear from Gene. During all the good cheer Dave arrived (Nadene’s friend), followed by more chatting and excitement. Eventually it started getting late and I needed to be put to bed as all the excitement of the day was starting to take its toll on me.

There was much animation in the house on Thursday morning, and I slowly began to realise that we were going out. After packing a small bag of things for me we were off. I was really impressed with my Mom being able to cope with me on my own, putting me in and out of the car seat. Off we went, heading toward Sunninghill, where we were going to meet with Lauren, my Occupational Therapist. She was overjoyed to see me, and she so pleased with my progress. To ensure my continued progress I was given additional exercises to do to help me grip and hold things. I was also introduced to brushing which is an awesome stimulant whereby my Mom or Dad, using a soft rubber brush, gently stroke my arms and legs, toward my heart, to desensitise me to touch. As you can imagine, being in hospital for four months has resulted in my associating touch with pain, as just about every time I was touched it was done with the objective of drawing blood, being tested, being measured or something similarly painful. It will take some time, but I’m trying really hard to get over this little obsession.

Friday morning was welcomed in with another flurry of activity around the house and immediately I knew another road trip was planned. Today I was heading off back to Morningside Medi-Clinic to meet with Dr Nicoletta for a check-up. She too was satisfied with my progress, and it was discovered that I now weighed 4.7kgs. We were all quite chuffed with my increased weight, but this was short-lived as Dr Nicoletta set a target of 120 grams of weight increase per week. My next meeting with her was set for a month from now; I made a mental note to make sure I’d put on my much needed weight, as I did not want to disappoint her. After seeing Dr Nicoletta we headed back to the car and we headed off further north to meet with Elmien, my Speech Therapist. Like my meeting with Lauren the previous day, this was exhilarating, as I was experiencing so many new places. Elmien was also amazed at my progress, and while at her offices I drank an entire feed from the bottle. We all cheered with excitement, but this was soon replaced by my Mom rushing around with paper towels as I threw up my feed. Although it was super to drink a whole feed from the bottle, it was also very exhausting for me, and it just didn’t want to stay down. I was so embarrassed, but I will need to practice this bottle drinking some more, as its really frustrating fighting through drinking an entire bottle, only to throw it all up again! So annoying.

After seeing Elmien, my Mom went and visited Granny. I must say that Mommy was really adventurous with me on Friday – three stops all on her own. After some tea we headed off home, where Dad was waiting for us. He needed some things from the hardware store, so Mom and I offered to collect him and go with. My first hardware store visit was awesome; I could now appreciate my Dad’s love of spending hours here, just looking at and touching hi-tec power tools, sophisticated laser devices, and tough garden equipment. I can hardly wait to start helping my Dad with the DIY around the house.

Friday night I slept in my own room (finally the old people trusted me). It was really great snuggling up in my beautiful mahogany cot, looking at my shelf of bears and other fluffy animals, and being able to select my own tunes on the iPod to drift off to, as opposed to hearing Dad snoring. Apparently Shatzi was also happy with my move to my own room, as she quickly took up squatter rights in my camp cot in Mom and Dad’s room. Sonic and Maple have far better manners, and are happy to sleep at Mom and Dad’s feet.

Waking up to a Saturday was really awesome, as my Dad didn’t have to go to work, so we spent the morning bonding as Mom slept in. After my early morning feed Dad and I settled down in the study and watched Discovery Channel. Apparently it is one of his most favourite channels, and I can see why – its all about technology and big things and animals and stuff. Just the type of viewing carved out for our inquisitive minds. I then opted for a mid-morning snooze. Upon waking up in the early afternoon I discovered more visitors – Bev and Claire had popped in to make my acquaintance. Again, it was so incredible to finally meet the kind people behind the beautiful comments and emails. They stayed late into the afternoon. Some wine was dished out and I really wanted to partake of this wonderful nectar, but sadly I will be required to wait a few years before my pallet will able to appreciate the tannins of wine. Mom rustled up the usual magically ‘meal from air’ and pretty soon we were all (expect for me of course) munching on cheeses and cold meats. Sadly the afternoon ended all too quickly, and Bev and Claire had to leave. As they were saying their adieu’s, some tears were shed, which weren’t the first of the week, upon my greeting my new friends.

Sunday morning was pretty much the same as Saturday morning, with Dad taking charge of me and my needs. Just before midday my Opa came to visit, and brought me a beautiful grey elephant. I wasn’t sure if I was more excited to see my Opa or my new elephant! I frantically looked around for Oma, but sadly she was too weak to make the trip across town. I decided then that I would need to go and visit her during the week to come. After Opa left, my Dad put me down to snooze, and Mom also decided to take a nap. I awoke shortly afterward, and Dad and I watched some MTV. We danced and sang along to our favourite songs, and I was having a generally good time. As I was so lucid, Dad and I went for a long walk in the garden. There he pointed out all the neighbourhood birds, and their feeding trays. We looked up the mulberry tree to find ripe mulberries, but alas they were too high to reach, and the lower ones were still green. I looked in awe at the purple carpet of jacaranda blossoms on the lawn – I’d never seen something so colourful before. Looking back at the house from the top of the garden I marvelled at the enormous oak tree in the garden, which dwarfed the entire house in its shadow. I could now understand how this majestic 45 year old entity sold my Mom and Dad on settling in this house so many years ago. As the sun started dipping off to the west, it started getting a little chilly for me and Dad brought me back inside, but not after we herded Sonic and Shatzi back indoors – they were as excited at being outside with me as I was.

Anyway, I must start finishing off now. Watch this space for an update on my smiling antics. Mom and Dad, although permanently having a camera pointed in my direction, still have not managed to capture my half (called a Harrison Ford smile) and full smile. It does suit me, as it gives me another week to work on perfecting this art. Some other highlights of the week have been that I’ve tasted some organic apple sauce, which I really loved. Mom also prepared some Purity First Food Maize for me, which I enjoy as well. The texture of it in my mouth is wonderful, and I can see myself tucking into this more frequently. I also savoured the icing of a chocolate cup cake that Roelof brought with on Tuesday. Again, I look forward to more of this. Bathing in a large, adult bath, is also really fun, as opposed to the small basins that I’ve been subjected to for the last four months.

Unfortunately not everyone is able to visit me personally, because of logistics, but they certainly haven’t forgotten about me. Aunty Birgitt and Wayne posted to me a wonderful rattle that is perfect for my age and my current gripping and holding exercises. My Dad’s eagerness at being home with me in the afternoon’s has caused him to be a little lax about going to the post office to collect the mail, so it took me and Aunty Birgitt to prompt him to check out the PO Box. He zipped off there on his bike, expecting there not to be too much mail. Boy, was he wrong! Not only was there tonnes of the usual stuff, but the latest Popular Mechanics, for which I got him a subscription for his birthday, was also laying in wait. He also noticed two parcel collection slips amongst the usual suspects of bills and junk mail, so he immediately went into the offices to claim my parcels. The gentleman behind the counter was very accommodating of my Dad, noticing he was on a bike, and suggested that he not take both parcels as the one was really big. After retrieving Aunty Birgitt’s parcel he asked to see and feel the weight of the other parcel. He was not deterred, and took the large parcel from cousin Lisa and Jason and strapped into onto the pillion seat with a cargo net. He made quite a site when he arrived home with this huge box. Needless to say, I was more keen to see what was inside the box; there was a beautiful bunny, a snuggledry bath apron and a towel, all from Lily ‘n Jack. Also, from Sophia, one of my Dad’s colleagues, I got a fantastic bit of memorabilia – a set of 2008 un-circulated coins. She also got me the cutest little blue catapillar.

I’m really proud of my Mom and Dad having weathered this first week with me at home so well – Mom has even managed to have dinner prepared for Dad on more than one occasion! In closing I must also update all my fans out there on Isabella’s progress. This past week she has started doing much better, and has started eating again, which I was really glad to hear about. Unfortunately she also throws up her feed from time-to-time; she and I call it synchronised barfing, as we both seem to have bad days that coincide. Also, spare a thought for Benjamin (his Dad works with my Dad), who has suffered some severe burns on his arms and chin, after an unfortunate baking accident (he’s starting early to be the next generation Jamie Oliver). He is healing well, but is very uncomfortable, which is preventing him from playing in the garden. As a result, he is also suffering from cabin fever!

Bye for now.

Lots of love, hugs and plenty kisses,

Jarrod

Figure 1 A true cuddlebunny

Figure 2 Happy to be home

Figure 3 Snoozing with Dad – note the similarity in our arm positions!

Figure 4 My gripper from Aunty Birgitt & Unca Wayne

Figure 5 Visting with Bronwyn

Figure 6 My first picture frame since coming home – from Bronwyn

Figure 7 Baby’s First Year from Bronwyn

Figure 8 Hugs with Nina and Gene

Figure 9 Gene decorates my guestbook

Figure 10 A little companion from Gene

Figure 11 Some cool threads from Nina and Gene

Figure 12 Me with Nadene & Dave

Figure 13 Cool threads from Nadene

Figure 14 Group photo – Mommy, Nina, Gene, Nadene, Me and Dave

Figure 15 Sing along “I kissed a girl . . . ”

Figure 16 And afterward . . .

Figure 17 In Bev’s arms

Figure 18 Finally Claire got a chance to hold me too!

Figure 19 Group hugs with Bev and Claire

Figure 20 Stunning roses from Bev and Claire

Figure 21 Shatzi the cot-squatter

Figure 22 From Opa and Oma – an adopted elephant

Figure 23 Caterpillar-a-la-Sophia

Figure 24 My Lily ‘n Jack pack from Cousin Lisa


Figure 25 A month’s supply of Infatrini to fatten me up

Figure 26 ‘Til next time!

5 Comments on My First Week Home

  1. Oliver Lederer says:

    Lynn and Norwin
    It’s so good to hear nothing but good news. Loved all of the photos.
    Jarrod, isn’t it just wonderful being safe and sound in a comfortable environment? It just goes to show how therapeutic it is to be at home. Now you get to grow big, strong and healthy.
    Best wishes and lots of love
    Gillian, Oliver, Ryan and Kirsten
    p.s. Looking forward to seeing photos of you in your Halloween outfit on Friday.

  2. Bronwyn says:

    Morning cuddle bunny

    It was really awesome being able to meet you and spend time with you,was really a special afternoon. It is just such good news to read your blog with all this positive happy news, and to see how well you are doing, and that you are growing so nicely now.

    You are such a special little boy.

    Love, hugs and kisses to you all.
    Love
    Bronwyn, Gary, Brannon, Rhainne

  3. Lisle says:

    Jaaaaaaaaaarrrrrrrrrrrrrrrrrooooooooooooooddddddddd
    You are indeed a BISCUIT. My heart is filled with such joy reading your blog! It looks like you have had a whirlwhind-of-a-first-week, what fun!! I have to admit, that on some days (whilts reading your blog) Faith was really tested. But you have done it – YOU ARE HOME!!! I laughed when I saw your stack of Infatrini (it reminded me of one of your mother’s birthday parties!) Is it any coincidence that you need to put on weight and your formula has the word FAT in it?..(you can’t fail). I really believe you have come this far because you have such an amazing team. Please let your Mom and Dad know, that I am in awe of everything that they have overcome, they really are the definiton of unconditional love. despite all the hurdles, they have traversed this journey with tenacity (whilst still keeping a sense of humour) – AND TRIUMPHED! Wow!! thank youfor keeping us updated, its the highlight of my day/week, and to be honest, the anxiety i feel everytine i open it, is slowly diminishing, as time goes by. Thank you for introducing us to your friends Isabella and Benjamin, I will certainly keep them in my prayers. Take Care “Phatty”

  4. Marie Vermaak says:

    Dear little big boy!

    Finally I breathe again! So wonderful that you are home and doing so well. But then you are very special and have the best parents any big boy could ever wish for. Enjoy each day and have lots of fun! And remember you are still in my prayers every day.

    Hugs and kisses from me to you and when you have the time, please pass it on to Mom and Dad as well.

    Good night and sleep tight

    Love

    Marie

    PS Your pictures are super cool

  5. Jenni says:

    Hello Honey Pie

    Sending you lots and lots of Love

    Jenni

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