Sad face Happy face
Aria is still walking all around the house. Â Now she is walking at the zoo, at the shops and everywhere we go. Â It is very cool. Â In fact she is down to one PT session a week!
Also last week she did an eating and swallowing test and the results came back great, there is no reason why she can’t eat and drink normally.  We kinda already knew but wanted to check nothing was aspirating into her lungs.
And, Aria is brushing her teeth! Â She loves it too and is doing a great job. Â Yes there are all kinds of reasons why teethbrushing has not been high on our list for Aria, unlike Asher, but it has been great to get success in this area.
Sunday crew (used with permission)
We had a visit from the team from Sunday (like 60 Minutes).  A reporter, producer and cameraman followed us for two days and we sat down to a fairly intense 3 hour interview.  Our house was transformed into a TV studio complete with lights and black out curtains, we even had to turn the fridge off!  It was funny.  It should air next Sunday 17th of October 7.30 pm Channel One
On the sad face side of life, Aria’s stoma outputs continue to be high which is ok. Â Her outputs have always been 300mls per 24hours which the transplant team describe as ‘phenomenal’. Â Low outputs mean her new intestine is absorbing all the food it is given. Â Now they are 600mls, she has another couple of days of ABX and once they are finished we are hoping it goes back to normal. Â But even with the high outputs her blood work is still good, she is absorbing all her nutrients, we have only had to increase the sodium bi carb.
This week has been a struggle for Hamish and I.  The diagnosis is most likely Homesickness.  Funny I have never really felt this until this week.  Knowing that there are no more kiwis likely to visit now before we leave was kinda tough.  Plus still feeling really sad about missing Alex’s wedding.  Plus struggling with making a decision about when to come home.  Sometimes we feel like we have made a decision and then something changes and we question it all over again.  We are praying hard for clear guidance from God.  We really want to come home, we feel there is nothing more this team can do for Aria and lets take her home ASAP so her family can enjoy her.  BUT it isn’t that simple.
We are weary. Â Torn between grieving from what we and Aria have been thru this year, it still hurts so much and we feel like no one understands. Â How could they? Â It is an impossible situation to even imagine up. Â But then we want to thank God for this opportunity and rejoice over His greatness to Aria. Â We should be ‘ok’ now, getting over it. Â It is harder than I thought it would be.
23 Responses to “Sad face Happy face”
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# 9 Oct at 10:21 am
Praying… it has been a traumatic time for everyone. Praying for peace, grace, and wisdom in all things. I’m so thankful that Aria is doing so well. It is a true testimony to the love of God.
In His great love,
Carolyn O’Cain
# 9 Oct at 11:07 am
I will be praying that God will give you a clear sign, as to when to go home. Your friends here in the States will miss you, but we all understand that you need to be near family. I’m glad to hear that Aria continues to do well, & I love the pics! God Bless!
# 9 Oct at 12:01 pm
You didn’t expect to be feeling like that did you? Our emotions behave in a funny way sometimes, so there is no need to feel guilty that you have these roller-coaster moments. Part of it is the let down in the adrenaline after the TV interviews. Very high voltage!!!
The great thing is God understands, He is there with you and “this too will pass”.
it isn’t easy to come down to being a more normal family either, but my advice is try and go to church together tomorrow just like a normal family!
Love you lots
# 9 Oct at 12:36 pm
Princess Aria looks so gorgeous in the photos! You are right when you say no-one knows exactly how you feel because we ‘haven’t walked in your shoes’-instead we have ‘prayed in your shoes’ so to speak-However, all in God’s time as he is surely preparing you for the big day and all must be in his ‘time’-As you always have done you will rise to this occasion and stand strong in his might-It will be a wonderful day! Keep leaning on the Lord and crying out to him in your tiredness-he will sustain you. Let it be well with your soul-love, Jeannie
# 9 Oct at 12:53 pm
Hi there, I say don’t be in a rush to come home, stay as long as you can, hey but who am I to say this!! Go well
# 9 Oct at 1:00 pm
Missed your posts the last couple of days but that is just a smidgen of how we will miss you when you go home.Oh what a delight to be back with your family soon.You have put your life on hold a year but look at that beautiful smile on Aria’s face and thank God for parents who trusted him to lead you where you are today. He will lead you home at the right time too.What a blessing you are to all of us.
# 9 Oct at 1:13 pm
What a beautiful happy face
I myself LOVE walking and its so good to hear that Aria is so active now 🙂
Praying that you will indeed will be able to come home soon
and that you will find the peace you crave to get over all you have been through
# 9 Oct at 1:15 pm
we are so close yet so far – I wish that we could venture north to Omaha to visit and hear some kiwis with a kiwi accent, but that will not be. It is a huge decision to make of when to come home and i will say some prayers for you tonight so that you may be guided on that decision. All our love form fellow kiwis who are in the US at the moment.
# 9 Oct at 2:47 pm
Praying for you, i know what you mean aboout really missing family. I still feel it even though we have been in Australia now for almost 5 years, you never get over missing your home country or your families.
# 9 Oct at 3:48 pm
You are describing beautifully what homesickness is, and what you are feeling is grief. This has cost you a lot (I know, it’s all for Aria who you love, but it’s still been a big price). That’s hard enough, but on top of it, you have been traumatised by the ups and many downs of ICU time/transplant procedures etc, and you need time to debrief yourself and heal emotionally. Tiredness and fatique always make these a lot harder. It’s a process and it takes time. Also leaving the USA brings another wave of letting go and maybe you have begun that.
Can I encourage you to SKYPE those in NZ you love so you feel more connected to them. And your friends from NZ write/SKYPE or phone you to let you know they love you heaps.
You have both been so amazing. I watched Attitude last night and I didn’t realise before then that Aria was the first one in the world to have survived two transplants. I look at your blog today and think of that programme – such a huge difference in Aria in such a short time.
Big hug, Jo
# 9 Oct at 4:32 pm
I’m so sad to hear you are feeling so homesick. I guess the reality of missing important things just brings it all home, no matter the reason you are there. Settling into a more normal life too will make you homesick because the hospital is becoming less important in your lives so you need to start looking at how to fill your days with things that nourish your spirits. I’m sure you will know the right time to come home in your hearts. I wanted to say how great Aria is looking in the pictures above. Hang in there, I know it feels like you are just killing time probably but it is all important. You still have your awesome MAW trip to look forward too as well. Hugs to you all xxx
# 9 Oct at 7:03 pm
Good to hear from you again, after a break,and great to see Aria looking so well and to hear that she is so active. Praying that God will reveal the time for you all to come home to NZ and that He will give you patience till then. Blessings, Judy.
# 9 Oct at 9:20 pm
Hi Guys
I understand to some degree, one day when we meet I will tell my story. What you feel is so very normal and without sounding trite it is part of the journey. I just so admire you guys and what you have done. A lot of your thoughts are my thoughts entirely but the only people who will truely understand is someone who has taken that journey to. Always trust your inner voice I found it never let me down, and guided me in a wonderful way. Love to you all Jan
# 9 Oct at 9:53 pm
I think sometimes it’s not til the worst is behind you that you allow yourself the space to really grieve. It’s a process and it’s normal and ok to feel this way. Be gentle on yourselves and each other 🙂
# 9 Oct at 10:48 pm
Jo’s suggestion of SKYPE sound a great idea if possible, reading you blog you both sound realy grounded and am allowing yourselves to experience the sad feelings as well as the joy which is very healthy. We all support you here in NZ and look forward to the time you can bring Aria home.
# 9 Oct at 11:44 pm
Thankyou for sharing with us. We hear you but don’t fully understand, so we lift you before the One who does. When you are weary and have no words He hears your heart. with love n hugs x
# 10 Oct at 5:10 am
All I can say Anita is that we love you all and pray and praise our Father with you, just be true to your feelings and tell them to Papa. He understands!
His Grace is Sufficient for Yous!!! Something I learnt this week when ill, is that no matter what we do or dont do, Papa still loves us. What we have committed to Him, He is faithful to complete it amen! Rejoice in the Lord I say Rejoice!!! The Joy of the Lord is your strength amen!!! Look forward to your trip to Disney or ??? dear family, Praise God for you all, what wonderful models of faith you are, maybe we could slot you into Hebrews 11, if we could, love you lots. Place your left hand on your right shoulder, and your right hand on your left shoulder, NOW SQUEEZE!!! love you heaps Hamish Anita family, Noa.
# 10 Oct at 2:19 pm
Lots of love my friend – will email….XX
# 10 Oct at 2:37 pm
Dear Hamish & Anita
You have run with endurance the race that has been set before you.
It is natural you should feel as you do right now but do not be discouraged because you WILL have the victory!
Love & Blessings from us both.
# 10 Oct at 6:52 pm
It’s totally understandable that you’re starting to notice the (comparatively) “little” things like homesickness now you’re not in the throes of the really major stuff. Plus processing the drama of the past few years – what a lot to handle! You’re in our prayers.
# 10 Oct at 9:12 pm
Hi Anita and Hamish…..This should have been entered ages ago, but we have been following your wonderful blog every day since the first Attitude programme which seems so long ago. It was fantastic to see the wonderful progress Aria has made…what wonderful parents she has!!!!!. She is soooooo lucky. Yes I guess home sounds like a great place to look forward to, but remember that should anything go bottom up with Aria in the next few months she is absolutely in the right place. As an ex charge nurse from DCC Auckland I just know what you have been going through. Every morning as I pass the office from bedroom to kitchen I have to stop to see the progress. We can’t tell you how much all four of you are and have been in our thoughts daily. Chin up, a few more visits to the zoo, and the local restaurants, especially if your little angel can now enjoy the goodies.
All our love and kindest thoughts,
Anne and Colin
# 10 Oct at 10:16 pm
Just blown away at how well Aria is doing. A walking miracle! Yeah, we miss you guys too. Come home soon! We are praying you will be able too. We really can only understand that no one understands what you have been through… understand? hehe. Love you guys heaps. xxx
# 18 Oct at 12:40 am
I am so happy you got better Aria, you were so brave. xx