Home life
Yesterday our family spent the whole day in our PJs. Â We had no were to go and no one to see so we made the most of it.
Transitioning home is always tough. Â Which is a little strange because it is the thing we miss so much when Aria is admitted.
Perhaps the reality is that Aria isn’t doing super awesome at home and it is a little nerve wracking. Â Combined with the fact she doesn’t sleep very well and Hamish and I are up a lot at night. Â And her med schedule takes up to an hour+ twice a day, which actually might sound like a dream to others I admit!
Aria weight has gone up a bit. Â Unfortunately she likes to drink a lot at night, around 500mls. Â We think it is just a habit/comfort thing, something to do. Â But when we are trying to dry her out and get rid of those puffy ankles and help that breathing it is counter productive. Â Do we take the water away and risk an even worse night? Â Perhaps we might have to bite the bullet tonight because readmission seems likely on the cards.
Overall we just feel really sad to be in this position. Â Aria was doing GREAT, off O2 during the day and a little at night. Â Now she is back on all day and night. Â And we don’t really have any great treatments or answers and any idea as to when it will improve. Â There were so many theories, fungus, bacteria, PTLD, graft V host (kinda rejection) and all have been mostly crossed off the list. Â She is on one extra breathing treatment to fix the mystery problem and other than that TIME considered to be the best treatment. Â We have to wait for her to improve.
Being on 2L of O2 means it is tough to get out of the house, we have to take a BIG tank with us and it gets used up pretty quick. Â Blah. Â I feel silly to complain given were we have been this year. Â But we tasted freedom and the good life and it was GOOD. Â We must fully trust in God for His timing and care and guidance. Â I wish I was better at this, Â I am trying hard though!!
14 Responses to “Home life”
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# 15 Nov at 4:00 pm
‘I have made you and I will carry you, I will sustain you and I will rescue you’ Isaiah 46.4 May you know the Lord carrying you when you can’t bear the weight my friends. Tis so hard for sure. Much love. X
# 15 Nov at 6:03 pm
amen to the above from Shirley
# 15 Nov at 8:25 pm
ditto. Kia kaha – you are held. Arohanui xx
# 15 Nov at 8:26 pm
I commend Shirley Davy’s scriptural thought, it says what we cant
# 15 Nov at 8:37 pm
Praying these bumps will soon be over and you all will be able to rest more.Know that prayers are going up and trust in the Lord That Aria will feel better soon.
# 15 Nov at 8:46 pm
Praying for a breakthrough for you all.
My husband has written the following poem for Aria – perhaps someone with Hamish & Anita’s email address could please draw it to their attention. Thanks.
http://www.rodwalfordpoet.com/aria.php.
“Yea, though I walk THROUGH the valley of the shadow of death,
I will fear no evil: For thou art with me;
Thy rod and thy staff, they comfort me….” (Psalm 23:4)
You will come out of this valley – He has said you will walk THROUGH! Praise the Lord!
# 15 Nov at 8:50 pm
Beautiful poem, brought tears to me, well done. Thinking of you Anita and Hamish, it is hard, but know you are in our thoughts and prayers xxx
# 15 Nov at 10:36 pm
Wonderful poem for Aria!!!Pray that Aria is getting better today amen. Pray you will all have some sleep tonight amen..
# 15 Nov at 10:38 pm
Thank you Lord Jesus for your healing touch today amen
# 15 Nov at 10:44 pm
I’m glad that Aria is home with you, and everyone needs a pajama day once in a while, but if I were in your position I would be fustrated too, on how things are going. We don’t always understand God’s plan, but it’s comforting to know He’s with us through every step. Praying that the doctors will find answers, & that Aria’s health will improve! God Bless!
# 15 Nov at 11:32 pm
How discouraged you must feel because you are right in there every day, every minute in every way. For those of us on the outside looking in, Aria’s journey is so hugely encouraging. The Lord has worked and moved in so many ways for Aria since the beginning (we have followed Aria’s journey since she was 6 months old) and it is so obvious to see how very much He loves her. He has given her life with her family; she has grown to four years old; she can laugh and talk and love and feel loved, all mixed in with the hard stuff. You have her, and she has you. To us, it is such a miracle that dear Aria has come so far. At the same time, our hearts cry out to God for your struggle, for all the waiting. We are all so human, and it is SO hard to keep waiting. We send you all our love, prayers and hopes for the GOOD times to return. XX
# 16 Nov at 1:50 am
Praying for improvements soon. I love her poem that Rod wrote for her. Keep hanging in there Anita and Hamish. God is on your side so Aria will get better soon. Blessings, Judy.
# 16 Nov at 12:27 pm
You guys have been through so much, I can see that you are much loved family and that everyone is praying for you, and like Shirley said the Lord will carry you, and you “will” get through. Prays are with you all xxx
# 16 Nov at 1:23 pm
Aww that is such a beautiful poem. Thinking of you guys, much love & prayers xx