Tubes
First up, our fellow kiwi in the US and a girl very close to our heart, Matisse got her transplant yesterday! Â Oh happy day! Â She had waited almost 4 years and we are so happy for them! Â In some weird way the surgery is the easy part and now comes the recovery. Â Praying and hoping it is days/weeks for Matisse rather than months like it was for Aria. Â We have such a positive feeling about this and are hoping for the very best for Matisse.
This pic was taken today in a moment of cuteness. Â As you can see the tubes are back. Â Unfortunately Aria’s tube blocked off yesterday. Â She is on a number of meds you have to crush up and eventually it gets clogged. Â It was due for a change. Â But we got the camera out in the mean time, it was kinda surreal to look at her face without tube.
Overall I would take NZ’s govt run healthcare anyday but there is something to be said about the speed things happen here. Â I rang the hospital to advise them Aria’s tube was blocked at 2pm. Â And hour later our healthcare company delivers two new ones (not the ones we prefer but never mind) and 7pm that night the nurse comes over to place it and take Aria’s blood which were due the next morning. Â Awesome.
Aria HATES having NG’s placed, they are the worst. Â Still we got it done in one go and she did great. Â She starting crying as soon at the nurse arrived. Â Asher immediately started giving her hugs and kisses and saying ‘easy peasy Aria’. Â He was so super kind to her. Â I am hoping that this journey is making him a compassionate and caring young man, it can’t be fun to see your sister crying like that.
In other news Aria was doing some excellent eating at dinner tonight. Â She was putting corn chips in her mouth and crunching them up with her teeth and chewing! Â We were very excited. Â She would pretty much spit out what she chewed but it was progress. Â She eats soup and ice cream and swallows that so she just needs to put the two things together.
Just wanted to say thanks again for the lovely comments recently.  They were so well written and well thought out and so compassionate.  Thanks for allowing me to struggle and express, it so helps with moving forward.  We can’t pretend we are super Christians, cause we SO aren’t.  I wonder if that is the message of our story.  Or at least my story.  My daughter is extraordinary but really I am very unsuited to this, it goes against my nature of wanting control and order.  But God has shown me a better way.
Oh yes and Aria is HOME!
13 Responses to “Tubes”
Leave a Reply
Support Aria
There are many ways that you can support Aria.
- Bank deposit
- Cheque by post
- Contact us directly
Subscribe to updates
Fundraising progress
Aria's support to date:
Progress meter: 75%
Links
- Hirschsprung’s disease
From Wikipedia, the free encyclopedia - Starship Children’s Health
The hospital that takes great care of Aria - The Kids Foundation of NZ
The wonderful charity that supports Aria
# 8 Dec at 10:04 pm
So glad Aria has her new tube and is home again with
your family together. Aria and Asher are so sweet looking together.May the days go smooth.
# 8 Dec at 10:19 pm
great to hear you up on top again-like we knew you would be!!! beautiful snap of the littlies-what a dear wee brother asher is-he will be so protective of her when he grows older-great the eating is taking shape too-God bless you all-love jeannie
# 8 Dec at 11:11 pm
Praise God there is no place like home..I have to smile when you said you are not a super Christian. I think Anita you do yourself an injustice and your patience, trust, faith and perserverance have been remarkable ! I often remind my pecious family that I will NOT win saint hood.. Lord knows I get too frustrated, tired, cranky to ever be near a saint..and God knows how much I pray for faith…it can be so very hard sometimes. But, I for one think you are a remarkable Mother and woman living under remarkable circumstances with grace, perserverance and courage…God Bless ,you all remain in my prayers! AND major prayers going for our dear friend Matisse…and her wonderful family too!
# 8 Dec at 11:45 pm
Oh Yeah! I hear you – I HATED having no control over Lara’s situation and struggled with it every single day. It still sends me into a panic when either one of my kids is sick or says they have a pain somewhere – I don’t think I will ever ever lose that feeling of slipping out of control, but I do cope with it a little better now. Those ng tubes are vile to put in and I don’t blame Aria for crying, I think I would too. I love how Ashie is such a caring wee boy and I really think this is just how he is and will always be, I know Jake is still so sweet with Lara and they just seem to get on so much better than his friends and their little sisters (they do have minor disagreements so not always perfect. It is just one of those beautiful outcomes of the whole saga, that you have this little piece of perfect in your two children.
# 8 Dec at 11:49 pm
That IS a cute pic! Kasper had to have an NG tube a couple of weeks ago and I was thinking of you at the time.
# 9 Dec at 2:40 am
Anita, you come across as a very strong person with a great faith. It is only natural that you will be down at times especially after everything your family has been through. Just remember that God is always there beside you and will never fail you. May He bless all of you and I am praying that Aria keeps improving. I love the photo of the two of them, so sweet. Blessings, Judy.
# 9 Dec at 6:34 am
Yay, God bless you and keep you going, love you and hooray for being home, praise Papa, thanksgiving for healing Aria and all of you amen!
# 9 Dec at 2:02 pm
Dear Anita and Hamish,Aria and Asher, I just wanted to say that God has a great purpose for you all, especially in sharing your journey so openly and honestly. Sometimes it seems that the picture of the ideal family of faith is one that is totally unfazed by all that is allowed to happen to them, a family that keeps smiling and trusting through the disasters, while maintaining perfect children and family life. This is just not true!! The pain and anguish and emptiness that you have spoken of in recent days is real for you and for so many people going through the type of rollercoaster ride you are on. The Bible shows real people in real situations, just like yours – think of Job (great friends he had!); think of David – his Psalms of anguish were not intellectual thoughts he jotted down from time to time. The Psalms are there for us to take comfort that it is OK for us to cry, to despair, to wonder where God is in all the mess, but to also remember that God is sovereign, and that he is to be praised and worshiped and that he does hear our cries for help and does deliver us from the depths of despair. God is a kind and loving Father, and he has delivered Aria so many times, and the most recent episode is no different. We just keep you all, and now Matisse and her family, in our prayers and thoughts constantly.
# 9 Dec at 4:12 pm
Oh what a cute picture! You can see how much they love each other. So wonderful to see.
# 9 Dec at 5:48 pm
Praying that Matisse will recover quickly, and that her transplant will stay well! Aww…that is so cute what Asher did for Aria! He’s a sweetheart! That’s awesome that Aria is trying new foods, and I’m glad to hear that she is home! God Bless!
# 9 Dec at 10:40 pm
I understand the need for control especially when Aria’s journey has been such a roller coaster and sometimes it’s so hard to hand over it takes great courage which you all have in abundance, I hope all goes well for Matisse and Aria’s progress will be smooth
# 10 Dec at 3:14 am
Hi Anita.
It’s so good and healthy for you to vent and express what you are truly feeling. My grandson has an n g tube and it is frightening but they have discovered spraying medazaline? up his nose makes him very calm and relaxed still a LITTLE apprehensive but so much easier, faster and calmer all round on everyone.
Love and blessings, Jane
# 10 Dec at 10:13 pm
I am always reading but rarely posting. I just wanted to say that I have yet to meet a “super Christian”. Isn’t that the beauty of the gospel? We are so incapable, so fearful, so sinful. We don’t believe, don’t trust, don’t pray. Thank goodness we don’t have to rely on ourselves.