Did someone say the H word?
I have sitting next to me a copy of the Pediatric Discharge Handbook, finally read it cover to cover.  Had to chuckle when going thru the pamphlets and one was called Pregnancy and Parenthood after Transplant.  Ummmmmm perhaps Aria is a bit young for that one!
Today the team was finally willing to put a time frame on getting home. Â 2-4 weeks is the plan. Â That is completely perfect because Hamish’s parents will be here during that time and we could use a hand. Â Still we aren’t getting our hopes pinned on anything just yet. Â There are four things holding Aria back;
1. Â The kidneys
2. Â The vent
3. Â The wound
4. Â Walking
She needs to be off the vent, dialysis sessions max 2 times a week. Â The wound needs to be able to be managed by Hamish and I and dressing changes once a day max. Â AND they want her walking a few steps. Â Honestly if the first three things are in order then there is no way she is staying in hospital cause she isn’t walking but we would like her stronger.
Aria had another day without dialysis. Â She peed twice as much on Sunday as she did on Sat. Â Still isn’t much but improvement. Â Her kidney numbers aren’t flash but they aren’t terrible. Â They gave her a dose of lasix to make her pee and she did response so that is great.
We also got some referral papers for Make a Wish today.  How exciting to be at that point!  There is confusion as to whether we are eligible for a wish in the US or we have to have one at home.  I hope Aria can do it here!  Of course we aren’t actually sure what she would wish for, Disneyland seems like the obvious choice- I think she would love it.  But I don’t want to put words (or wishes) in her mouth!
Finally we met some Texan friends yesterday for the first time which was really nice. Â Their oldest son thankfully avoided bowel transplant, God has done an amazing work in his life and body. Â Lori and I have been in contact for over a year now and she put me in touch with Carol and Cordell before we arrived. Â Finally we met and hung at the Bullis house on Sunday arvo. Â They kindly hosted (and fed) both our families! Â I remarked to Lori when we were finally sitting down that I was tired of being a single parent. Â She got it and I knew she would. Â It felt good to talk with someone who got it and got thru it and is still getting thru it.
Tomorrow is a crazy busy day- lots of appointments and training to take care of Aria at home. Â Exciting!
24 Responses to “Did someone say the H word?”
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# 28 Jun at 8:29 pm
Very very exciting, wouldn’t that be wonderful, Glad you had a nice time with Carol and Lori. Not long now till we see you all
# 28 Jun at 8:30 pm
Wow the ‘H’ word how exciting for you all!! Aria has done so well and I’m so very pleased for you that everyone there has put a plan and time frame in place for getting you all in one place.
Aria really is an amazing wee girl!! All the best for the next few wks towards reaching your outpatient goal!!!
xx
# 28 Jun at 8:54 pm
LOVED LOVED our time together!!! Can’t wait for more. And SO GOOD to see Aria in person today. She is absolutely beautiful!!!! Praising God for that little discharge handbook! Such an answer to prayer.
# 28 Jun at 9:03 pm
WOW such exciting changes every time we get the chance to read on here. Feels like we haven’t seen you all in ages… but brings great joy to keep up with your progress. Glad you got to meet your Texan friends! Prayed for Aria together tonight… love to you all.
# 28 Jun at 9:29 pm
Home….what a wonderful sounding word! Miss Aria and her family are amazing and God is doing a great work in you all! So happy to have been a part of a meeting of like minds (you and Lori)! Fun to see you all together! Thanks for hanging out with us!
# 28 Jun at 9:35 pm
FANTASTIC!!!!! What more can I say!!!! Love to you all xxx
# 28 Jun at 9:50 pm
OMG! You know once they start mentioning the ‘H’ word you are on your way! Yeeehaaaa! I am so happy that you have got this far, from just dreaming of this day to it actually being a real tangible thing for you to grasp. yea I know there are a couple of steps first, but seriously, does anyone really believe that Aria won’t achieve them with her amazing progress so far??? So happy you got to meet Lori and can now call her a ‘real’ friend rather than an electronic one!
# 28 Jun at 10:21 pm
it will be nice for you to have Hamish’s parents with you all
praying that all goes to plan and that Aria will be home soon and that she does get indeed get to go somewhere really special like Disneyland
# 28 Jun at 10:59 pm
So exciting and so pleased for you all!
# 28 Jun at 11:09 pm
This is so exciting to hear but also challenging for you both. Praying that as you stand together as husband and wife for Aria and her brother you will be strengthened all over again for the things to deal with. It would be lovely for Aria to have a special wishI am guessing that the whole family gets to go with her which would also be wonderful for you all.
many Blessings.
# 28 Jun at 11:16 pm
OMGoodness, what a surprise. Aria is hooting along at full speed, but to hear. see that ‘H’ was just the icing on the cake. What a fab goal to work towards & we KNOW you will all do it.
This is so amazing.
What is the pricess choosing off the menu these days? You on the phone for room serice often with her requests as she experiments with food, or is ‘noodle’ still giving her most of her needs????
Time to get our dancing shoes out & dusted ready for the big day as it will come, even if not in their time frame…Aria might even beat them & their predictions.!!!!
# 28 Jun at 11:39 pm
Won’t that be the best day,good work team!!!!!!
# 29 Jun at 12:06 am
Wow! Awesome news!! Hope it becomes a reality, praying it will :o) there really is no place like home.
# 29 Jun at 2:19 am
Way to go Aria and Family! keep up the good work. God is continuing to do amazing things.
# 29 Jun at 3:14 am
That would be wonderful. Aria has come so far. So much to look forward to now. xx
# 29 Jun at 3:24 am
aria you little legend. all of us are so excited for the day you head halfway home with you mummy, daddy and asher and even better that your grandys will be with you. i love the smiles such a cute little princess that you are. much love and hugs xx
# 29 Jun at 3:41 am
What an amazing time for you guys – wonderful.
# 29 Jun at 4:34 am
How exciting for you getting a time frame to be together under one roof. Praying for all to go smoothly to make it happen. Blessings,
Judy.
# 29 Jun at 5:19 am
Halleluia, way to go Aria and pray for all those 4 main points and excell in all of them amen, thank you Papa praise you Papa thank you so so so much amen.
# 29 Jun at 5:24 am
fantastic news.Was lovely the other nite to see and chat with Andrew and Nola Young
# 29 Jun at 7:24 am
Wonderful news. God is so good. Happy you were able to meet Lori. Caed had such a tremendous healing with God’s hand. You and your family and Caed’s are such a living testimony as what God can do if we just allow him to be in control.His will not our’s.
# 29 Jun at 7:34 pm
That is exciting news! I pray Aria does get to go home in 2-4 weeks! That would be awesome! It’s nice to know that you have found some great friends, here in the U.S! God Bless!
# 29 Jun at 9:43 pm
What great news all those prayers and good thoughts are getting through its great you are able to talk to someone that has been through it.
# 1 Jan at 1:07 pm
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