Enthusiasm

Nothing great was ever achieved without enthusiasm. Emerson. 

With three children each attending a plethora of extracurricular activities each week I think I spend 75% of my life watching little kids taking classes. I see the revolting aggressive children, the disinterested ones, the obedient ones and then there are the Teds. They are the ones for whom many things are difficult but never do you see the struggle. What you see is the effort. 

Perhaps there is an element of bias, perhaps not but I am yet to see any child try harder than Ted. His motor delay is significant, he has poor proprioception, and he has very low tone. He gets puffed out before the other kids and usually he is half their size. These things never stop him trying. He is such an enthusiastic little person. 

 Today he was awarded his yellow belt in karate. He was fierce! Each tremendous little move came from a place of determination. Such spirit he has.   
  

I readily admit to being a Tigermum with my children. I do not care for laziness. I don’t care if they come last or get the lowest score as long as I’m certain they’ve genuinely tried their best. Near enough is not good enough. 

Teddy is such a good sport. He always has a go and he never quits. People might see his beaming little face at activities and watch as he trips and falls and gets up and trips again. At a party I could see he was holding up the queue of children because he was struggling to complete a task at the trampoline centre. 

A few parents were getting impatient. A couple were rolling their eyes and making their frustration known. Ted kept trying and eventually he got it and I cheered and clapped and people looked at me like I was a freak. I’m the parent that cries when my kid finishes the egg and spoon race. 

If only they knew the many hours I spend with him at home and at therapy working on the basic climbing skills the other kids take for granted. Jumping into a foam pit and climbing out again sounds basic but for Ted it is challenging. So this Tigermum will unashamedly keep going. My enthusiastic Teddy is so full of spirit it would be a shame to waste it on apathy.

Never say never

  
So to the fool doctor who said it was unlikely Ted would be mainstream schooled I say guess what genius he is four and he is learning to read so you were so wrong with that one.

To the perinatologist who said that choosing life for Teddy would ruin his sister’s quality of life I say nothing makes her happier than when Ted plays games with her.  Especially humiliating dress up ones where she is the boss and he doesn’t protest. 

And to all our beautiful friends and family who supported us and agreed when we said lets give this kid a chance, who knows what he can do… 

I present you with this video of Ted running in his first sports day today. Sure, he came last. He will probably always come last but look at him go!  We could not be prouder of Ted. He never stops trying. 

Grace

This weekend the children kept distracting me every time I went to post this update on Ted’s first week back at school. I wanted so much to share with all of Ted’s fans the news of his incredibly successful week. But now tonight something else has prompted this post.

But first I will show you this~

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I captured a real superhero on Saturday morning on my coffee-table. Battle scars and all, there he was. Triumphant. His first week back at preschool, finally doing his usual things and doing it all, with, as he says “a new kind of special heart”.

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Friday was Ted’s first lesson back at ballet and he was so excited to see his beautiful ballet friends. Tabitha kept watch at the door and said he was definitely having fun.

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Friday night we took the kids out for dinner to celebrate two things. One that Ted is sleeping a lot better and two that he had an excellent first week back at preschool. It is truly a gift to have Ted not only well enough for school but bursting with happiness and funny stories about his classmates.

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That brings me to some heart-breaking news. My heart is heavy tonight as are the hearts of all the other Australian HLHS mums following the tragic death of ‘Benjamin Braveheart’ today. A strong and beautiful boy born with HLHS the same year as our Ted.  Sadly unlike Teddy, Benjamin’s Fontan was not successful and after months in hospital the doctors were unable to save Benjamin and his loving family said goodbye to him this afternoon.

By God’s grace I am sitting here tonight telling all of our caring friends and family about Teddy’s great first week back at preschool. It could very well be a totally different story for Ted but for now it isn’t. Benjamin’s fate could very well have been Ted’s and for his beautiful, brave family we mourn tonight.

Somehow Ted’s Fontan path was different. For this outcome we have been given, we are eternally grateful. Knowing also that quickly things can change, never wanting to cross the line into complacency but at the same time rejoicing in our blessing.  Rest peacefully dear brave little Benjamin now you are in Heaven. That is our prayer. X

Finally! Ted returned to preschool today

  

What a fantastic day Teddy had today. After so many months stuck with mama Ted now has his amazing teachers and beautiful classmates for company! 

Ted’s first day went very well, as one of his teachers said “it was like he never left”. Ted is looking forward to returning to class tomorrow. He said the best part of his day was playing Ninja Turtles and Star Wars with his mates Leo, Mitchell and Audrey at lunch time. 

  
Ted did so well with his appointment on Tuesday. His paediatrician said everything is right on track and echoed what his cardiologist said a few weeks back- this is definitely a successful Fontan case! 

We have been referred back to Ted’s ENT surgeon along with his baby brother it looks like I may be on the hunt for a two for one deal on tonsillectomies! Ted may also need to have a sleep study done. Being the cheeky brother that he is, Ted was cheering that the paediatrician ordered blood work on Monte but not on him! So empathetic our Ted. 

Finally…

smiles all round today

  
For the time being, the germ cloud over our house has been lifted! We are so excited ted should be able to start preschool again on Wednesday. 

Hallelujah! 

Also, he has another paediatrician check up on Tuesday so I will report back on his progress. 

Ladybugs

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Just as I was settling the boys down for a lunch time nap today there was a knock at the door. A surprise delivery from Anya one of the kindest, most talented caterers in Sydney.

I learnt by the time Tabitha was five that catering my kids’ parties myself was not one of my strengths. I was thrilled to find Anya from Catering for Kids because not only is she a genius at bringing children’s party dreams to life she is also exceptionally lovely!

Well it turns out that Anya has been following my blog and today she brought me this stunning ladybug cake with a heartfelt note saying our family is in her thoughts and here is a hug from a ladybug! Could she be any lovelier?!


It is fitting then, that we have had this ladybug sighting since it is believed that it symbolises healing and I’m really hoping it means the sickly ones in my house  will be feeling 100% better soon. How adorable is this cake? Who dares eat such a beauty?!


Below are some beautiful shots taken by Cherelle Martin at Teddy’s second birthday where Anya created the most delicious spread for our teddy bears picnic party. 

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Today I can report that Teddy’s temperature has come down again which is a huge relief. Unfortunately his tonsils remain a pair of revolting red and white spotted golf balls. We are praying for a good improvement by tomorrow or we will have to submit him for some more invasive testing and treatment. It is beginning to look more and more likely that this poor fellow will need to have the tonsils out this year as tonsillitis has plagued him for a few years now and the risk of endocarditis is pretty scary… Although the possibility of another operation is also pretty awful for the poor babe.

Hopefully I will have great news of a recovery to report tomorrow. Ted is so sad he has missed preschool, we hope he can return next week. It has been so long.


Fever is on the way down slowly 

  

Teddy is still not great but I think he is turning the corner to recovery. His temp is no longer over 39. It is back down I the high 37s. I’m really hoping he picks up a lot overnight and we can kiss these gems goodbye really soon. Poor little fellow keeps asking if this is the day he goes back to preschool. He has really been off since 2 December so IT IS TIME! Come on germs, depart already! 

When life gives you lemons

…the chipper amongst us would suggest ‘you make lemonade’. I would suggest you just throw them at really annoying chipper people. It might help.

  

An update from the petrie dish that is our family at the moment~

The doctor has said Tabitha is well enough for school tomorrow! Monte is now down to Ventolin only every six hours and isn’t contagious, tomorrow will be eight hourly. Excellent. 

  

Poor little Ted however, he continues to be very unwell. He was up most of the night with fevers and again for much of today. 

   

We saw the doctor this afternoon, the Endocarditis risk is real. So he has advised me to switch Ted’s antibiotic medication and report back. I am praying he turns a corner tonight. The last thing we need is another trip to hospital. 

Not to be left out of the drama, our dog Beatrice chose today to pee on Ted’s new rug. Twice. 

As penance for this, she was bathed and then dressed in this very unflattering absurd sweater.  She wasn’t impressed but my care factor is low and she deserved to feel a bit silly. Plus it is cold here in Sydney today! 

  

Please keep Ted in your thoughts. We really need hi to get better ASAP. 

Xxcarolyn. 

Home sweet home

Since Monte made it nicely to third hourly Ventolin overnight he was discharged today. Yay!

Here he is looking chipper to get home:

  

We now have an asthma management plan for the little guy and for the next few days he needs his ventolin every three hours to keep everything under control. And also I suppose to ensure I never ever get a solid block of sleep since the universe decided long ago that my kids should wake me every few hours. 

 

As you can tell by these poorly little faces Ted and Tabitha have now been struck down by the germ monsters. We had both Ted and Tabitha seen today. She has a chest infection and he has strep throat. So an amazing week awaits me! 

 

Unfortunately Richard has to be overseas this week so I need these three to get well ASAP.