Archive | November, 2012

Sun, sand and splints

19 Nov

I apologise that it has taken me a while to update after the last post – it has been a busy time which is good! I am in countdown mode until Little Bubs makes her appearance and with everything that is going on, time is moving swifly. I have only 3 more weeks left at work then the real countdown begins!

First of all, our appointment with the pediatrician did not unfortunately give us the good news of weight gain that we had hoped for. No loss which is excellent but the no gain is a disappointment especially with the increased ml. To add insult to injury, since the appointment we have had to drop down in mls as we have seen a return of the dreaded vomiting episodes. Only minimal and not nearly as dramatic as previous but we are wary of pushing her too far – better to have less feed and keep it all down then force more and have her throw it all up anyway. She has a slight cough at the moment which I also think is contributing to the gagging.

In my scan and appointment, we were pleased to hear that all is well and the Little Bubs is measuring about 5 days ahead which is a good start towards the goal date of 12/12/12! I am now on weekly appointments.

The weekend before last was a busy one with some interstate guests which was lovely. Friends from our time in Darwin came to stay and we headed down to Anglesea for a few days. Once again, the weather gods played ball and we had two really gorgeous days where we were able to take the small ones down to the beach, Tilda enjoyed putting her toes in the sand but the water was a bit too cold for her!

Last Tuesday we had our appointment at the Orthotics and Prosthetics Clinic to get Tilda’s feet cast for her AFO’s. I was a little concerned but Tilda took it all in her stride (as long as she was able to still see Dora!).



They should be ready in a couple of weeks. The good news was that the Dr who took the casting said that her feet were actually pretty good and not as bad as they had initially thought.

Her arms and hands are a slightly different story, with definite signs of stiffening. We have some new arm splints for her which she wears to keep her arms straight, this doesn’t seem to bother her too much, although it doesn’t look particularly comfortable.


We also have had her hand splints moulded at school which will assist with the curling of her fingers – this also doesn’t seem to bother her which is great.

My dear friend Millie’s book, The Thrifty Gardener was launched last Saturday with a wonderful afternoon of plants, produce and people. Unfortunately, Tilda wasn’t doing too well so we decided that she should stay at home but I went and represented the family. I once again urge you to have a look at this wonderful book, it would make a great Christmas present! And not just because Tilda is on the front cover!

On Sunday, Simon and I attended the wedding of a very dear friend which was a very special day. As part of their gift registry, the couple had asked people to donate to TeamTilda which was just amazing and we were very touched by the gesture. Tilda was looked after by her awesome aunt Kylie who took her out and about in the wonder van and did a fantastic job. Thanks Kylie!!

All in all a busy time with more busyness to come!

Much love


Does she even know…

6 Nov

Does she even know who I am anymore?

What does she see? What does she think about?

How much more will we lose?

We will lose her completely. But on days like today it feels like we have lost her already. She is unsettled. I try to comfort. She does not look at me. She does not let me comfort her. Her body flails. She tries, tries, tries to lift her head. She squeaks. She  is frustrated. I am frustrated. How can I help her?


For a while.

But even Dora doesn’t work her magic all the time. Maisy. Harold. Charlie and Lola. Attempts to cuddle. Rejection. My tears. This is when she laughs.

For some reason, she finds me crying very, very funny. This is good. I like her laughter but today although I smile through the tears, the tears keep on coming because the connection is not being made. What is sad? I guess I am glad she doesn’t know. It is my sadness not hers.

I get on with the day.

Dora is currently working. There is quiet. My tears have helped.

Very Special Kids

Over the weekend, we used the respite services of Very Special Kids for the very first time. I was able to stay in the parent accommodation right next door and we were in with our lovely friends Nicole and Jack.

It is a very surreal thing to do,  hand your medically fragile child over to strangers and let them take charge. Let them do the medications, the feeds, the overnight position changing, the entertaining, the everything. All Nicole and I had to do was go out for meals, see a movie, sleep in and shop! Of course, it wasn’t that simple – I found it pretty hard to let go. Will they understand her squeaks and squawks?  There was a lot of paperwork to fill in before we got admitted and they are incredible about updating her file with her likes and dislikes so that subsequent visits are even more tailored. I am so grateful that it is available to us and certainly the care that Tilda was received was fantastic. She was happy and cheery. Especially in the “princess chair” which looked amazingly comfortable, I have begun my search to find one for home.

It was, all in all, a positive experience. We are booked in for some more time in January for when the baby is here and Tilda is on school holidays and I have no doubt that we will make even more use of it over the next year.

We have another pediatrician appointment on Thursday – I will be really interested to see whether our increase to 500ml a day has assisted in her weight gain. Also on Thursday, we have a growth scan for the baby and I will be really interested in that one to see whether or not my wish for a 12/12/12 delivery is likely! I will report back!

Dora and a change of position have done the trick. For now. The lack of connection continues but I put it aside and enjoy the smiles.


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