Update- what an original title!
Aria seems to be improved this morning. Normally her temp would spike at 7am at around 38.2 but this morning it was around 37.5. Her bili number has improved slightly too to around 93, which is still high but a bit better.Â
We think she needs another dose of Gentamicin but her levels were too high 24 hours after her last dose so she is being woken at 11pm tonight for a finger prick to get another level 🙁
Hamish and I are planning and re-thinking our current situation. Today was really difficult. Our lovely friends the Bakers, picked Asher up this morning to take him to Kerriannes, our lovely carers house. As soon as he saw his carseat going into the car he cried and cried, big tears. Those who know Asher know how easy going and relaxed he is. This was very strange behaviour. Hamish rang me later to say he was going to take tomorrow off so I could spend time with him. He really misses his mum and dad and his sister and it is heartbreaking because there is no way to explain it to him.
This admission will be the 5th this year. The sacrifice that we make to keep Aria healthy is totally worth it, in fact 10 admissions would be worth it. But it is still a sacrifice and a toll on our little family, in fact our wider family and friends too. I had to cancel at least 2 commitments and we just made Tre’s 1st birthday. Thankfully, bar the odd exception, people are hugely understanding and supportive and realise our focus is fully on Aria and maintaining our family and marriage during very adverse conditions.
Overall we are all very weary. Hamish and I have an appointment next Wednesday with WINZ so we are hoping for a positive experience. I had a nice chat with them on the phone so we are hopeful.Â
We are so grateful for so much things and I am reminded of this verse
Isaiah 40:31Â (New International Version)
Â
 31 but those who hope in the LORD
      will renew their strength.
      They will soar on wings like eagles;
      they will run and not grow weary,
      they will walk and not be faint.
We have that exact same hope in the Lord, a promise that He will be our energy to sustain us when we feel we are at the end of ourselves. Isn’t that great?
4 Responses to “Update- what an original title!”
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Links
- Hirschsprung’s disease
From Wikipedia, the free encyclopedia - Starship Children’s Health
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# 7 Sep at 10:38 pm
Hi guys
Praying Aria is now on the mend. We continue to pray daily for you especially at the challenging time. Indeed it is God who will give you the strength to rise up and He is your comforter. May our gracious God indeed give you strength and wisdom.
In Christ
The Bracefields
# 8 Sep at 7:17 am
Oh sweetheart! It will be better one day. Hang in there. Keep your circle tight and focus on just your wee family. If it helps, Jake used to cry and break my heart too – he would say ‘mummy I don’t want you to go to hospital’ but I see now that he is a fabulous caring kind and fun boy who has absolutely no ill effects from being placed in the loving care of others while we were constantly in hospital. I used to explain everything we did and where we were and he was always ‘in the loop’.
Asher will be ok and will understand later that this was just how it was. You and Hamish will be the ones scarred for life but later when everything is settled again you will know you did what you had to do and will be at peace with it. I don’t regret a single moment we had to be with Lara because I look at her now and look at Jake and it was all so worth it.
Just keep hugging each other and focus on you and Hamish, you will be ok. Lots of love xxx
# 8 Sep at 8:42 am
Let us know if there is anything we can do – prayers and thoughts are with you xxx
# 8 Sep at 9:32 am
I wish I could be there, so I could do something for you! I pray that God gives you strength, & hope through all of this! I pray that your friends & family will continue to support you through this difficult time, & I pray that Aria will get her strength back & be herself again!