Development 101

Hello Everyone!

Since my last posting I’m over all my ‘addictions’ and am really settled in well. Now the focus is predominantly on my development, having been flat on my back for the past 16 weeks. My really awesome Mommy spent every day with me last week giving me kangaroo-care. This has done wonders for me and I can feel I’m starting to become a little boy! My Mommy would arrive early each morning and spend until the early evening with me. She’d then go home for a little while and then return in the evening again with my Dad in tow. It’s been a really fun week as a result, with the highlight of the week being that I was declared fit on Friday to have more visitors. You will recall that earlier last week I was put into isolation as I had two infections.

My Opa and Granny came to visit me Friday morning, which was really awesome. Neither of them had seen me for almost ten days, since before I went to Unitas. They were both really impressed at my progress and general demeanour. To ensure I get maximum benefit out of my development now that I’m off just about all my meds and I only have cables attached to me for monitoring purposes, my Mom, Dad and I met with an occupational therapist yesterday morning. She was truly impressed at my development, considering I’d been through five procedures in 3 months, and that much of this time was spent being ventilated and sedated. Having heard my medical history prior to meeting me, Lauren, the occupational therapist, was expecting a vegetative cuddlebunny! But again I proved the world wrong.

The four of us went through a barrage of questions and discussions about everything that had happened since my big entry into the world. To assist with the info gathering my Dad frequently referred back to my blog to get the info first hand, and also to show Lauren various pictures of me at different times, as well as my multitude of scans, ending off with the last scan of me head which illustrated the “pot-scourers” lodged in my fistula! After this rigorous consultation, Lauren started to examine me and made lots of suggestions for my Mom and Dad, including exercises, music and white-noise, and how to sleep appropriately. I must say on the topic of sleep I’ve really come leaps and bounds in that the last few days I’ve slept through the whole night. As a result I am awake much of the day, which is actually ok, as this gives me time to do my exercises with my Mom and Dad.

On the occupational-therapy scorecard I did really well with the fact that I engaged in self soothing to put myself to sleep by means of sucking on my right fist. On the development side I’m supposed to do this with my left fist as well, which now makes it clear why my Dad is always trying to coax me to suck both hands in equal amounts. The ‘big-people’ also got very excited about the fact that I’m crossing my hands over on my chest and tummy. Personally, I don’t find this too difficult and not such a great feat, but if they think it is, then they’re welcome to praise me for it. I’m also tracking objects in my line of sight, particularly faces and items and toys of highly contrasted black and white. Although my line of sight really only extends to 30 cm or so, the ‘big people’ consider this great. For me personally, I’m a little disappointed, as I’d like to see more of the world, but I guess that will come with time.

I’m starting to grab stuff as well, and on the recommendation of the occupational-therapist (OT), my Mom and Dad went out and bought lighter toys that rattle a little. My Dad really wanted me to start lifting heavy weights already, but he was dissuaded and gave in to the light-weight stuff. I find that having opposable thumbs is really hugely beneficial in holding on to stuff – whoever invented those was a genius! Continuing on the OT theme, a programme has been developed specifically for me, in which my folks also play a very small part. This involves playtime, which my Dad normally does with me, eating time, time to wake up and be energised, and time to calm down and be still. I’m finding it a little difficult keeping my parents in check with the programme, but on the whole it really works. Playtime with Dad involves rolling to the left and right, in his arms, and then focusing on his face or some other nondescript object! This afternoon he incorporated this with some music, which was really cool but tired me out pretty quickly. Admittedly, I need to get used to his choice of music, which comprises lots of trance and pretty-pop, and after dancing in his arms for about ten minutes I passed out from all the spinning and activity, ready to be given to Mom to be calmed down and then fed. Mom gently sings to me and pats and rubs my back, and pretty soon my Dad’s loud music is forgotten!

The other activities I’ve started in a big way, with the help of Mom and Dad, are that of stretching and baby massage. For a while already my Mom and Dad have been rubbing my legs and arms, and getting much needed moisture in my skin through massaging baby oil into me. Under the directive of the OT they now are able to do more deliberate stretching of my little limbs and back, as well as more concerted massage. I’m loving every minute of this, as it is also built into my programme and is creating a wonderful routine for me and my folks.

Something that I’m struggling to understand is that a speech-therapist is coming to see me during the week as well. I tried to protest at hearing this, but in vain, as the appointment has been set-up for early Tuesday morning. My protests were based on the fact that I’d not really mastered the art of speech as yet, so I felt it a bit premature to discuss this area of development with a specialist; however, I guess I’ll humour them. If this appointment goes well my next blog may actually be a voice bite which you can download as a podcast!

Today was a wonderful day, as both my Opa and Oma came to visit me. I hadn’t seen my Oma for about three weeks, as she can’t visit me during the day because of her cancer, so Sunday’s are a real treat. Another really awesome happening today was that my Mom and Dad bathed me this afternoon. Normally I get bathed during the night by my caregivers, but today I got an afternoon bath as well. It was really fun, and I tossed about in the water like a mad person.

I am still underweight, but through a very well defined diet of breast milk and Infatrini I’m sure to pick up the much needed weight. It is expected that once my weight is at desired levels I might start heading off home. Another much anticipated milestone will be when the paediatric-cardiologist returns from leave and another sonar is done of my heart. This will have given the coils (aka pot-scourers) in my head time to settle in nicely and the resultant pressures in my heart can be measured – we’re all hoping that these will have reduced significantly, and I can start to be weaned off my heart medication.

Well, that’s about it for this evening’s posting. As always, thank you to everyone out there following my progress and constantly keeping me in their thoughts and prayers, and mustering up hosts of angels and archangels to watch over me and make sure I heal and speedily head toward my journey home.

Love,

Jarrod

Figure 1 Here’s me helping Dad to pay some bills over the Internet

Figure 2 Chatting to my Opa on Dad’s Blackberry

Figure 3 Mom and Dad catch me on film having a cat nap

Figure 4 In Oma’s arms with Opa close by

Figure 5 In Opa’s arms – note my crossed over hands (very exciting)

Figure 6 On Dad’s tummy, testing out my opposable thumbs

Figure 7 Snoozy Cuddlebunny

Figure 8 Handsies!

Figure 9 Dad fooling about with the camera en route to visiting me

Figure 10 Hello world!

Figure 11 Team Lederer having a chat

Figure 12 Dad bottle feeding me, which is very important for my homecoming

Figure 13 Yum, fist tartar

Figure 14 The safest place ever – Mommy’s bosom

Tags: Dad, Granny, Mom, Occupational Therapy, Opa, Speech Therapy