~Updates~

*Note - Updates will appear with the most recent at the top.

“JAKOBS FIRST OVERSEAS TRIP”

Update September 2005

Our little man coped remarkably well with the flights and the different environment for the week that we spent on the “Gold Coast”.  The weather wasn’t too hot, just a pleasant change, and most days were reasonably busy with the usual visits to the theme parks as well as catching up with a couple of friends.

Jakob had his photo taken with “Scooby Doo” and “Sylvester” at Movie World and we just had to visit “Wiggles World” at Dreamworld for his souvenir photo with “Wags the Dog” and “Captain Feathersword”.

During our break we were also very lucky to be able to meet up with Andrea, Nev and baby Kellin.  This was very special as it was our first opportunity to meet another family with a child with HLHS.  They were really lovely people and Kellin was adorable.  It was a wonderful experience for us and we are grateful to have had this chance.

Jakob continues to do really well and is gradually mastering finger food and a few more “lumps” in his food !

Last week he took his first steps by himself  without the assistance of furniture etc to cling on to and this was a very special milestone achieved at nearly 16 months.  He has been standing in the middle of the floor for quite some time and just needed that extra bit of courage to move forward, “well done little mate, you made it”!.

All told Jakob is a really contented and happy boy who is a pleasure to have around, his courage and determination, as well as his cheeky personality make us very proud.

JAKOB – Update September 2005

Well it’s time to update Jakob’s HLHS journey again.  This year seems to have gone so fast and along with moving house and one thing and another we now find ourselves in September.  Jakob has been progressing really well and apart from having one cold through the winter his general health and wellbeing has been fine.  He has breezed through his routine cardiac clinic visits at Starship Hospital with flying colours.  We are so proud of our little man and sometimes have to remind ourselves that he has a serious CHD.

June was a special and emotional month for us for two different reasons.  Firstly my dear mum Rita passed away.  Sadly as a result of Alzheimer’s disease she never got to know Jakob but I know deep down she is so proud of him and she will always be his very special Nana watching over him.

We also had a huge reason for celebration as it was Jakob’s first birthday on June 24^th.  It was hard to believe that already a year had passed since that very anxious and emotional time that accompanied his birth and the beginning of his HLHS journey.

We had a wonderful day with family and friends and Jakob cut his very special cake decorated with Winnie The Pooh, Tigger, Piglet & Eeyore.  We were just so grateful to be able to share this important milestone with our precious wee boy who’s courage and determination makes us immensely proud.  It was a truly emotional day and one we will treasure.

Developmentally Jakob is doing everything to be expected of a boy his age.  He has 14 teeth and is constantly pulling himself up onto furniture and walking with support.  It won’t be too long before he is running around everywhere.  For the moment he thoroughly enjoys getting into all our cupboards and drawers and is slowly taking over my kitchen!  He loves television and particularly the daily programmes on Playhouse Disney.   

Jakob had a scheduled routine cardiac catheter at Starship in early August which included a 2 night stay on the heart ward with Mum.  We hadn’t been to the ward since October last year and it’s amazing how quickly all the memories of his long stays there flooded back.  It was really hard taking Jakob to theatre but we knew it was necessary to determine his progress and following the procedure he bounced back very quickly.

His Cardiologists and Surgeon were extremely impressed with what they found and he received an excellent report – we feel so lucky that he has done so well so far.  It sounds like he will have the Fontan done at around age 4 with a possible MRI scan when he turns 3 to determine if another cardiac catheter is required pre-Fontan.  This would principally be to coil any collaterals prior to the Fontan operation if so required.

Jakob will now attend routine cardiac clinic visits every 8 months and remains only on a daily dose of aspirin to keep his blood thin.

In mid September we are taking Jakob and his big brother Daniel to the Gold Coast as we won a free trip there earlier in the year as part of a promotion for selling the house we owned at that time.  This will be Jakob’s first plane trip and we will be away from home for a week so we are all very much looking forward to this.  While there we hope to catch up with Kellin, another very special boy with HLHS, and his parents Andrea and Nev.

All in all then Jakob is just like any other 14 month old little boy.  He chatters away endlessly, plays with his toys, laughs when he knows he’s done something he shouldn’t have, and normally eats and sleeps at the appropriate times.  That he is on an HLHS journey, which so far he is managing with so well, just makes him all the more special.