Reunited

Hi everyone,

As promised in last night’s blog, I’m now going to chat about this past Sunday, when I meet some more of my extended family. Before I get into that, however, I feel it only fair to chat about my progress here at home. I’ve now been home three days, and I really enjoy it here. Everything is so ‘normal’ here. At the hospital things were very clinical, and there were lots of rules and do’s and don’ts. Here at home I feel a far greater degree of freedom; I’m convinced my Mom and Dad feel much the same. They no longer need to ask permission to bath me, or have to check in my status every few hours, or if they changed my nappy, tell the nurse what was in it, if anything, and describe it by colour and texture – I kid you not! Sometimes my nappies were even weighed to determine the volume they held.

With my new found freedom I also feel empowered and have managed to exert a degree of control over my environment. In just two days I managed to train my parents and put them into a well structured routine. They’re oblivious of this fact, and they kept congratulating themselves on how easy this all was. Well, it wouldn’t be that easy if they hadn’t inadvertently adopted the routine I established for them. Without their knowing it, I can even control whether or not I like an outfit that they’ve chosen for me, or a blanket. If I don’t like the style or colour they’ve dressed me in, I simply throw up all over the outfit, and it gets changed. I generally keep this up until I’m put in an outfit of my liking. Having discovered I have two beds to sleep in I use the same strategy – if I want to be in my bedroom, but I’m put down in my camp cot in the main bedroom, I simply barf all over the sheets. It’s absolutely brilliant! Who would have thought that communication could be so concise and easy to interpret.

My most enjoyable time is with my Dad at five in the morning, as this is his shift. Saturday and Sunday morning went really well at this ungodly hour, but this morning he decided to break the routine I had established for him. He did my usual cares and then proceeded to lay out my syringes with all my meds and a bottle of food, and a syringe through which I would be fed. Next he turned the TV onto CNN, and I settled in his lap and started drinking from my bottle. I have the old oaf so well trained that he even holds my bottle for me – I hardly have to do a single thing. After drinking for about 15 minutes I get really tired, so we move onto syringe feeding, which he has got down to an art, with my direction and guidance. After feeding and having my medicines administered, he settled me down on a continental pillow next to him on the sofa in the study. This really annoyed me, as it was not the routine I established for him. The insolence! Normally Dad would lie on the sofa and I would lie on his tummy, known as tummy-time.

My Dad disappeared up the passage, which I decided to let slide, and then he returned with a strong smelling steaming brew in a mug and some other paraphernalia. He proceeded to sit next to me on the sofa and clicked a switch on the one gadget. Buzzing, it was then raised to his face and as he ran it along his jaw line, the little black hairs on his face disappeared. I should have been more curious about this, as I’d never seen this done before, but I was too annoyed. An intervention was required, so I opted to regurgitate the Ferimed (which is the really awful iron supplement that I’m on) onto the continental pillow. The response was as I desired, and I received my Dad’s full attention again. Off we went to my bedroom to change, which fell in nicely with my plan as I didn’t like the onsie he had dressed me in earlier in the morning. I was cleaned off and wiped down and another outfit was chosen for me by my Dad. I really like all my clothes, but I don’t always feel like them, and this morning was one of those days. The outfit Dad had chosen was not up to my mood today so I had to think fast. To barf again would have required enormous courage on my part, so I opted to sneeze, and sneeze, and sneeze again. My Dad really thinks that my sneezing is cute, but what he doesn’t realise is that it pops the bung off my feeding tube, turning it into a fire-hose of stomach gunk. I was undressed again, and cleaned off (I was hoping all this cleaning would serve as a credit tonight when I was forced to bath, but alas, that didn’t happen). This time my outfit was to my liking and I was quite content to settle down. Dad opted to put me down in the camp cot next to where my Mom was having a snooze and soon I drifted off to sleep.

Some time later I recall my Dad leaning over me, kissing me goodbye and wearing really formal looking type clothes. Another first, as I’d never seen him dressed like this before. Although he looked really smart, his face was sad, and I could have sworn there was a tear in his eye. Later I discovered that he had gone to ‘work’, and had to leave us alone for the day. This made me sad too, and I now understood why he looked the way did when he said goodbye to me and my Mommy. My Mommy told me that Dad was very sad at having to be away from me for the day, and I really wished he could stay home, but unfortunately there were these things called ‘bills’ that had to be ‘paid’. Sounds like boring adult stuff, and I made a mental note to not get too involved in this stuff too soon.

Anyway, enough about my dressing antics, and back to the topic on hand: the meeting of the family. First Oma and Opa arrived. Because Oma is struggling with her breathing, she made my Dad lug this huge machine from the car that produced oxygen. It was plugged in in the lounge and soon some tubes with nasal cannula were produced. I recognised these, as I had used similar ones in hospital. Next arrived Aunty Kim, and my cousins Shannon and Tamsin. Aunty Kim brought her friend Ronnie with. I looked everywhere for my cousin Ryan, but he was nowhere to be seen. Upon enquiring it turned out that he was not feeling well. It was truly exciting, and I was passed around and was the general centre of attention. Ronnie and Dad disappeared outside to the gas braai, and some meat was slapped on the griddle. Some time later Kim joined them, and Dad eagerly asked if it was awesome to have held me, to which she replied “There’s a queue, and its not getting any shorter, so it’ll have to wait!” Wow, I really was popular today – my own queue.

Sometime later in the afternoon Granny and Rebecca arrived. More holding and handing around – really awesome. My attention was piqued at the wonderful home coming gift Granny had brought me – a rocking horse that even neighed. I can’t wait until I’m big enough to ride on the cute little pony. Just when I thought the afternoon was settling down Garth and my cousin Ryan arrived. What festivities. Everyone ate and drank and there was euphoria about the place. The fact that the garden hadn’t been tended to for four months, or that the pool was green, never even bothered anyone. Dad kept apologising for this, but all the guests told him not to worry, as they understood that the last four months had been really taxing, and all energies and efforts were focused on me – nothing else mattered to my Mom and Dad in this time.

Although the house was abuzz with activity and seemed full to the brim – everywhere I looked there was a face looking back at me – I know that I still need to meet my Uncle Oliver and Aunty Gillian in the US, as well as my cousins there Ryan and Kirsten. I also still need to get together with my Aunty Birgitt and Wayne from Cape Town. Also from Cape Town I still need to make plans to meet up with Uncle Frankie and Aunty Henrietta, as well as cousins Lilanie and Liza. So many cousins, so little time . . .

Good night, and lots of love, hugs and kisses,

Jarrod

Figure 1 My rocking horse

Figure 2 Flowers from Shannon

Figure 3 Before Kyle checked out last week (one of my fellow NNICU inmates) he presented me with this

Figure 4 A going home present from Helen, Mike and Isabella (little Shatzi was not part of the gift)

Figure 5 Me with Opa and Oma

Figure 6 Me and Tamsin

Figure 7 Me and Shannon (spot Maple in the background!)

Figure 8 Me with Aunty Kim

Figure 9 Me and Ryan

Figure 10 My Family