Back in the saddle
Today Aria got out of bed into her push chair/pram/stroller for about an hour. She was a bit concerned about it at first but after we snuggled her up in her blanket she relaxed a little and seemed to enjoy the change of scenery. While she was there she did some colouring and reading which was nice.
The sitting up is great to keep on building the muscles up to support her with her breathing. As her diaphragm isn’t so hot, she needs to use all the other supporting muscles to compensate. If we keep working at it and she does well, we might be able to give extubation another crack.
Aria also did well today with other things. She did really well at music time. She showed as much interest as she has for a long time and happily banged the drum and shook her shakers along to the songs. It was pretty cool. She also enjoyed playing with her Counting with the Wiggles book. It is a book where you count different things and then use little magnets to say how many things there were. She did really well picking out the right numbers and doing her best to stick the magnets to the page. I think she really enjoyed playing with something and having a bit of different stimulation.
All in all it was a good encouraging day. The road ahead is still long and I’m sure it has more bumps and curves but it is days like this that give us encouragement.
19 Responses to “Back in the saddle”
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- Hirschsprung’s disease
From Wikipedia, the free encyclopedia - Starship Children’s Health
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# 27 Mar at 9:31 pm
that’s our girl Aria – well done and great to hear of these significant gains. praise God for each little step. We love you all
# 27 Mar at 10:03 pm
well done Aria you are a star!!! LOVE YOU
# 27 Mar at 10:11 pm
great to hear the progress you guys-good on you little soldier Aria-remember that Easter is all about NEW LIFE and we believe this for Aria too-it’s so good to hear the excitement in emails with your little steps onward and upward-you deserve huge medals for your courage! God bles – jeannie
# 27 Mar at 10:21 pm
Lovely to read the last few days have had some lovely positive moments – Go Aria, your amazing! xxx
# 27 Mar at 10:27 pm
awesome stuff – onwards and upwards Aria – hope mum & Dad are having some time out this weekend hugs
# 27 Mar at 10:33 pm
That’s just great reading! So nice she was interactive and pushing the boundaries…. well done you all! much love. X
# 27 Mar at 10:47 pm
So lovely to hear she is doing well. Love and hugs to all of you. xxxxxxx
# 27 Mar at 10:54 pm
Loved the blogs over the past few days. Little Aria is making the steps in the right direction. Go Aria you are a superstar. Xx
# 27 Mar at 11:01 pm
Praise the Lord for positive progress. We were praying for you all at Redeemer this morning.
Blessings in Christ
Tony
# 28 Mar at 12:27 am
WTG!! Aria
so pleased for you all 🙂
# 28 Mar at 3:03 am
Good job !!!!! So thankful for these better days.
# 28 Mar at 3:07 am
Hi,
We were fortunate that my son Jacob did not suffer from Hirschsprung disease, as it is more common in those with Down Syndrome and, you all have shown remarkable persistence and determination to do what’s right for Aria.
Few people really understand the struggle and all the medical appointments, the sacrifice of finances and the constant battle to get proper services. So good on you for standing behind your daughter so strongly.
To comment belatedly on a much earlier post, we went to sue a doctor many years ago, and the lawyer said to us, the doctor has insurance, you don’t, and they’ll just wait and drag everything out till theres no money left to fight them with. So we walked away, feeling very much the victim – you way of having a meeting wasn’t something we considered, as the doctor wouldn’t listen and had his own very biased opinions.
I wish you all the best for the future, and it is good to see that Aria is developing so well with her speech and intelligence.
Kind regards,
Donald.
# 28 Mar at 3:58 am
Praise God for more steps forward and thank Him for Aria’s strength of character which will bring her through.Praying for improvement to her breathing especially her diaphragm. It sounds as if her new organs are working OK.
Yours in Christ,
Judy.
# 28 Mar at 6:39 am
That’s wonderful news that Aria had a great day! Keep her motivated and remember to do the same for yourselves. If you all have the same state of mind, it will make things much easier. That, and you have your support team from all over praying for you all and the lovely Aria. <3 Goooooooooooooo ARIA!
# 28 Mar at 8:52 am
YAY Aria!!! 🙂
# 28 Mar at 3:28 pm
I am still following your progress Aria – you are an amazing and brave little girl – all the best for the next few days – try hard my friend – hi to your parents and hope they are getting some rest too.
# 28 Mar at 9:51 pm
You are my HERO Aria! Well done, it must be such an effort but you push the boundaries anyway. You are awesome!!!
# 28 Mar at 11:43 pm
Praise the Lord for the progress Aria is making.
May He sustain her and you as parents!! Love from the Sonnevelds
# 29 Mar at 5:51 am
That is sooo Cool!thats our girl, keen to face the world whatever the circumstance. What a thrill to hear such news. Bless you Ham and Anita. Please pass on lots of our hugs and kisses to Aria and Ashie!!