September!
I don’t have anything particularly wonderful to say. Â To be honest it is all rather boring around here. Â Boring and busy. Â The days seem to fly by and not even sure why.
Aria continues to do well. Â Her walking and standing are coming along really great. Â Her fine motor skills like writing and colouring are not going super well. Â Which is very odd because she loves OT and hates PT. Â But seems to be doing better at the PT side of things. Â We are very much hoping Aria will be starting school in June 11, in New Zealand. Â So encouraging her use of a pencil and felts is kinda important.
It is exciting to think of her going to school, less exciting to think of her starting during cold and flu season. Â Mmmmm. Â Still her lungs hopefully will be healed and better by then. Â We are trialling her off O2 during the days and that is going well. Â She sits around 95 which is ok. Â We changed O2 suppliers, thankfully, yesterday and now have better equipment. Â So we can take her rate right down to 1/8 or even 1/16 of a litre of o2. Â She does really well on 1/4, sits at 100. Â So she is making progress.
We got to church on Sunday which was awesome. Â Aria loved it! Â She is really excited to go back. Â Everyone was so kind to us. Â We got asked a few times whether it feels like we are on vacation or if this is our life now. Â I said it feels like neither of those things more like recovery. Â We are still recovering, like Aria, from what we went thru and what we saw our daughter go thru. Â Very painful still. Â Some days I feel like I just have nothing to give. Â I hope that will change because I want to give a lot.
Lastly we were VERY excited to read this article. Â Finally fundraising for the renovation of Aria’s ward, 26B and 26A has started. Â It is badly in need of a reno and I am dreading going back. Â Anyway. Â New Zealanders please consider donating, honestly $3 amount quickly add up! Â See below.
The fundraiser runs through September atwww.trademe.co.nz/starship. People can give $20 by dialling 0900 STARSHIP or text STAR to 469 to give $3
14 Responses to “September!”
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From Wikipedia, the free encyclopedia - Starship Children’s Health
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# 1 Sep at 5:12 pm
Wow…. great to hear all the progress… Alking and standing go Aria. Wonderful to hear that you all got to church on Sunday. Kids are funny and they will concentrate on one thing someimes and it seems that Aria may well be concentrating on her gross motor skills. Just perservere with the fine ones they’ll come along when her bo9dy is ready.
I must admit to missing your posts but its great that there are fewer and fewer cos that means miss Aria is getting betterer and betterer and that gladdens my heart , know that you are all in my thoughts daily as I wonder and pray for contiued progress and good health. Glad to hear all the “normal” stuff.
# 1 Sep at 6:24 pm
Do you know children don’t have to start school on their fifth birthday in NZ? You have until they are 6. So you could always keep her home for a few more months until the weather is warmer, or even till the new year.
I too am so happy to see fewer posts as you get on with a more normal life with a much healthier child!
Rose
# 1 Sep at 8:03 pm
Yay for boring and plodding – much better than frantic and desperate! Great to hear Aria is making good progress – the other areas will catch up. Must be weird having time on your hands at home though – something you are not used to any more!
Happy to hear they are fundraising for our home ward (or was!)it so needs it and I am always very stressed being there and thinking we may have to share with our immune suppressed child.
I can’t believe both our girls are starting school next year – Lara is four in a couple of weeks – eeek! Where did that go? I kept Lara out of kindy until summer because of all the bugs and I really think you should consider this with Aria and school. Don’t be worried about her missing out because you could start homeschooling her yourself (would prob be a couple hours a week) and to be honest she will start in year one at the beginning of the next year anyways and will only be in year 0 even in June! The amount of things kids pick up at school is huge and starting her in summer would ease her into it and get her immune system kicking off slower than winter. I really understand that you want her to have a normal life too so just consider it – whatever you are comfortable with 🙂 Take care, always thinking of you xxx
# 1 Sep at 8:05 pm
Good to hear progress is being made.
Ditto on the state of Starship wards – some are badly in need of attention.
# 1 Sep at 9:27 pm
Isn’t it funny when “normal” is boring! But really, deep down inside you are enjoying it and our advice is: enjoy every minute of it!!! Kids grow so fast and this period of time will never come again.
# 1 Sep at 9:49 pm
It might take time for Aria to do some things, but I bet she will color & write all the time, once she has the hang of it again. Wow! Aria going to school in New Zealand sounds great! Your American Friends (like me) would miss your family being here though! I know you’re probably eager to get back home though. Are you counting down the days until the trip to Disney? God Bless!
# 1 Sep at 10:25 pm
Hi I can so relate to what you say that you feel you have nothing to give. I can fully understand what you are saying, and now that I am 12 years from our challenge looking back I beleive that that is part of the healing process, and it means that you have to heal yourself before you have anything to give as you guys have given so much and through it all have probably lost a bit of your self but you will know when you are ready to give again but it does take awhile, just look after yourselves first. love to you all
# 1 Sep at 10:49 pm
So pleased & happy for you that things are progressing …one day at a time…..
Geepers you are so right abt not only Aria recovering but you guys are to. Aside from any photos the most vivid are those seen thru your eyes & photocopied in the brain. Even as those days become further in the past they will remain with you for a long time, albeit fade slightly as time passes. Am not being negative with saying that cos hey, it is reality. You all are recovering, just in different areas. You have both stayed so strong during those very dark days, but it wld have been very draining & you can’t let your ‘guard’ down in a hurry.
It is healing & adjustments to you all & you continue to be just soooo amazing.
Blessing to you all
# 2 Sep at 12:58 am
so pleased to read that Aria is continuing to do well
# 2 Sep at 1:40 am
I was thinking over the last few days no news must be good news!! So boring is good, cool one, keep on keeping on……….
# 2 Sep at 2:00 am
I am so pleased that Aria is doing well. I will continue to keep you all in my prayers.
Judy.
# 2 Sep at 3:02 am
Boring is good. It has been a rough time for you all.Donate $3 to Starship Txt STAR to 469 Done!
# 2 Sep at 6:40 am
I too miss the daily posts but as I prayed last night I thanked God that there were no special immediate needs for Aria. Just wonderful that things are going so well. The little things will fall in to place when needed. Enjoy your family together and look forward to Disney.
# 3 Sep at 4:40 pm
Praying for your homeland of N.Z. and that all your family is safe.