2008 May - Aria MacDonald

Thanks Chris for your question after my last post. We are more than happy to answer questions, thank you for following Aria’s progress!

Just as I was typing this Aria is telling me that she wants more of her toast for breakfast. Whenever we have food Aria has to be in on the action and we encourage her to be. She has her own food or we give her a little bit of what we are having in her own plate. She has her own sipper cup and likes to have some of Asher’s pumpkin.

Does she actually eat what we give her – not really. It is more like pretend play that kids Aria’s age like to do. She puts it in her mouth and pretends to chew, she doesn’t actually really bite or swallow. If it is mushy like Asher’s pumpkin or weetbix she will have a tiny bit.

Food is more of a social thing, that people probably don’t realise. It is important to us that Aria doesn’t feel different or weird. Awhile ago we went to her friend Lara’s transplant birthday party and she sat with the kids with food on her plate, you wouldn’t of picked she didn’t actually eat. We treat Aria like she does eat cause one day she will and we don’t want it to be weird for her.

There have been a few ‘firsts’ in our house this week. Some we have experienced before with Aria, others we haven’t.

Asher got his first tooth this week! So excited, and he has been an angel, not problems at all. I was so excited about Aria’s first tooth too, it was the first milestone we had experienced with her that was normal!

Asher also started on big boy food this week too, he has had carrots and pumpkin so far. We of course didn’t have the pleasure of mushing up veggies and watching intently as Aria took her first bite. But we did with Asher! It was wonderful and he is doing well.

It has be such a blessing to have regular parenting experience with Asher. There is sadness there that Aria is different but we embraced it. Asher has brought us so much healing.

Aria and Asher are so cute with each other. Both of them were giggling to each other in the car yesterday. Each would set the other one off in fits of giggles, it was hard to concentrate on driving cause it was so cute!!

There were angels in my garage yesterday in the form Nana and Poppa MacDonald. Hamish’s mum and dad spent a good couple of hours in there sorting thru our rubbish and treasures and we can now get a car in there! This is the first time Hamish and I have ever used our garage for actually storing a car!!!

Just as the rubbish sorting was being completed another angel walked thru my garage door carrying our dinner for the evening. Thanks Nitika, super grateful.

Aria is much better and attempting some walking and crawling (always a good sign) she is currently as I type trying to change Asher’s nappy! This morning we had some dramas with her g tube site leaking and being gross. We were at our wits end and bummed about missing church. Finally we changed the whole tube and it seems much better.

Anyway better rescue poor Asher from the lovely but over zealous affections of his sister!

Aria is coming home this morning after a fairly long period of observation, she has been fine and is improving.

Thanks to everyone for their kind words and support.  Some lovely person left a batch of very yummy muffins on our doorstep which were gratefully received and my friend Sarah made me yummy pizza for tea last night.  Rebecca was kind enough to give up her entire day to support me and the kids in hospital yesterday, what a huge relief and such an awesome thing to do.

We went back into Starship early this morning for a CT scan to see what was going on with Aria’s brain (not a CAT scan – confusing). The good news is that it was clear! The bad news is that she wouldn’t go to sleep for it so we had to put her under. It was pretty stressful.

Anyway so no answer on what exactly cause the seizure. It is quite common for kids to have seizures when they have a high temp, unfortunately that wasn’t the case for Aria. Her temp was perfectly normal the whole time 🙁 So it is a mystery at this point. We are hoping it is just a random thing and it wont happen again.

Anyway thanks for your messages of support, they mean a great deal.

Yes, no time for sitting around feeling sorry for yourself around here.

Aria was taking back to Starship via ambulance last night. She started convulsing and screaming late last night so we rang the ambulance. It was awful and scary and so very terrible for her.

She is ok now, it pretty much lasted about 5 mins. They let us go home at around 3am and we are going back this morning for a CAT scan. There is something going on in her brain which really scares us.

We are trying not to be to fearful but this is really difficult.

Please pray hard for us, we need it.

THANK you to everyone who left awesome messages last night- so awesome to read them this morning.

Ever get that feeling that you are running on empty?  Part of me (actually most of me) doesn’t even have the energy to update this site.

Anyway - we are home and Aria is much better and we are on once daily ABX.

I just feeling like crawling into a corner and….well not sure what.  Anyway this is probably the lowest we have been in awhile.  But hey, that’s life right! 

Turns out Aria is sick from the disaster with her central line yesterday.  Well it is looking fairly likely that is what happen.  This morning she is culturing a gram negative bug in her line, which means it is a gut bug and different from the bug she had in her line last week.

This just seems so harsh and unfortunate.  We were due to finish ABX (antibiotics) on Monday and she was looking and acting so much better.  Then we have an accident, her line gets contaminated and the whole process starts again with no let up or rest. 

But nothing is an accident, it is all part of a plan and purpose, thankfully.

Did you notice that I put a question mark at the end of the title of my last post?  Aria is back, but back in hospital 🙁

I was so confident today that she was better I rang the lovely Gastro Reg and told her we might not need our clinic appointment on Monday.  Later this arvo we had a disaster with her central line and by about 5 pm she had spiked a temp.  It could be the Staph coming back or it could be a new contamination. 

We are gutted, not at all how we wanted to spend our weekend.  We are struggling right now trying to keep it together.  Actually Hamish is awesome, he is my rock and hero.  Seriously I can’t gush enough about my husband and what a great father he is.  I can chat to him about my stress and he always points me in the right direction- the direction of God.  Yay, I am so thankful

Anyway Aria is about to have a fairly rough week I think, please be earnest in your prayers for her.  She has been doing it tough and I feel awful for her.

I think Aria might finally be on the mend.  Today she is much improved and happy and smiling.  Still a little unsettled and senstive but still closer to the happy and healthy Aria we know.

It has been a really stressful couple of days.  I won’t go into the details, it is fairly boring but trips to Starship with 2 kids and all that it entails is difficult.  I am torn between trying not to sound like a moaner/complainer and the need to own and acknowledge that the mothering situation I am in is difficult at times and to cope I need to voice it. 

Well yes, so that is where we are at.  We are looking forward to a three day weekend and really spending time in our new place which we are loving.