Clinic
Aria had clinic today with the transplant team and we got to see the surgeon this week which was good.
Aria is still doing well. Â Her kidney and liver numbers are normal! Â Feeds are going well.
The only major (ish) concern is her rash/skin condition. Â Her EOs are very high meaning she is having an allerigic reaction to something. Â What that ‘something’ is is a bit of a mystery. Â Her feeds are a type of formula for allergies so can’t be that. Â We are only using olive oil and organic shampoo and body wash (which is beautiful BTW). Â We use eco friendly natural laundry stuff. Â Mmmmmmm. Â So we watch and waiting and hope it will improve.
The PT and OT sessions are going better. Â Still having to leave once a session and give her a time out. Â But she does heaps better when we return. Â She is getting stronger even day, it is so cool to see.
Aria is only having O2 at night and on a minimum setting.  Of course we aren’t getting a good reading at night on her o2 stat machine so she could be doing even better.  Hoping they might agree to take the trach out next week at pulmonary clinic.  That would be awesome cause it is a bit of a pain, but will see what they say.
All and all her health is great.
22 Responses to “Clinic”
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# 29 Jul at 5:56 pm
go aria. you are doing so well sweetie. Anita Hamish and Asher you guys never cease to amaze. it is great to read your posts and feel in the loop. please know there are many of us behind you both in NZ and Omaha. x
# 29 Jul at 6:18 pm
Some kids with extensive medical histories have allergies to things no one else is allergic to. I don’t know what kind of formula Aria is on, but Blaise had a reaction to Neocate and we eliminated a million other foods, etc., because “Neocate is hypoallergenic.” We finally switched it out for another formula and things got much better. It might be worth a try, especially if the formula or skin care companies are willing to give you samples. (If you write and explain the situation, they often will send some for you to try out.)
I am always delighted to see that Aria has had another good day. She’s an extraordinary girl with an incredible family and it makes my day just a little better to know that she’s doing well. Thank you for sharing her story.
Erin, Ben and Blaise
# 29 Jul at 6:27 pm
It is so wonderful to see Aria doing so well. I just wanted to say, don’t be too quick to discount things as the cause of her rash. My son used to react to ecostore washing powder so it could be something like laundry powder she’s reacting to.
x
# 29 Jul at 7:39 pm
Hi Anita I was reading your update and saw that Aria is having a rash U know Almariah had a rash too and we couldn’t figure out what it was until someone said it looked like eczema! she never had that before her transplant but I found out that a lot of kids get this really bad rash after transplant I think it has something to do with the medication. Well anyways there was this lotion that the pediatrician Cindy from the P floor prescribed her and Almariah’s rash got so much better. Maybe you can ask them about it and try it to see if it helps. Good luck and take care.
# 29 Jul at 10:44 pm
mmmm…. rash. sometimes people are allergic?intolerant to things that are supposed to be good for them!. Maybe something in the “organic” stuff you use is causing problems. I quess its a case of don’t discount anything and ivestigate everything. Anyway my prasyers and thouths go out to you all.
# 30 Jul at 4:50 am
So glad Aria is doing better esp with PT and OT.I will pray that the cause of the rash is discovered quickly so she loses the itch. Blessings, Judy.
# 30 Jul at 7:17 am
So glad things are going good. About the allergies-it could be something so simple as the dyes in her clothing.Time will rule things out but I do hope they find it soon. It is very uncomfortable for her. Will just pray for it to go away.You all are doing such a super job.
# 30 Jul at 11:18 am
Praise the Lord for such encouraging progress.
The Bracefields
# 30 Jul at 11:28 am
thanks Anita for good news of dear Aria and we give Papa praises for all his loving care and answers to prayers, way to go Aria! you have lots of advices for the itch so start experimenting family, one at a time, am sure Papa will help her to stop that itch amen.
# 30 Jul at 12:06 pm
Hmm.. I was just thinking of this, because I had an issue with my ostomy a long time ago, but would she maybe be allergic to the appliance being used for her ostomy? Have you all thought about that? Or, maybe a latex allergy? I don’t remember if that’s been mentioned either. 🙂 Just thinking of things… that and I also ended up being allergic to all tape, but paper tape now. My skin is so sensitive. Love yas.. I hope you find the answer. (hugs) God Bless! <3
# 30 Jul at 12:59 pm
Its good to hear Aria is doing good, she is on the up and up, way to go. Love and hugs to yous
# 30 Jul at 2:04 pm
I truly can’t get over seeing that HUGE smile of hers. AMAZING!!!! Praising God for His continued miracles in Aria’s life. (oh, and HOW EXCITING about MAW and GKTW!! Will certainly pray specifically for continued improvements so she can make the trip.)
LOVE you all……(will get your pics to you SOON!! Been away from home the past 3 weeks)
# 30 Jul at 2:36 pm
Seems like lots of good and maybe helpfull thoughts about the rash. Hopefully that will be sorted soon. Everything else is just so good to hear What a wonderful family this little princess has
Keep it all happening Aria xxxx
# 30 Jul at 3:24 pm
It’s great to know that she’s doing so well. I hope her rash goes away soon!
# 30 Jul at 3:24 pm
God Bless!
# 30 Jul at 3:55 pm
Hi. can they do a ‘patch test.’ I had one on my back after suffering terrible eczema. They leave a sheet on your back for 24 hours which contains samples of various things – washing powder chemicals, latex etc. you have to keep the back dry, and the next day or so will show the docs specific allergies. Easy, painless for a child. I switched to sensitive washing powder and it made my husband and i worse! Gone back to regular. xx
# 30 Jul at 4:48 pm
wonderful to see the progress that is being made. Aria has come such a long way. Will pray that the Lord will give you insight with the rash. I found i reacted to the wipes that was using! You will be adding another skill – that of investigators! Much love
# 30 Jul at 4:53 pm
It is so lovely to hear the words ‘kidney tests, liver tests” and ‘normal’ in the same sentence – what a day huh! I think you’ve had some good suggestions to explore about her rash so have nothing to add except well done to all of you – go Aria you are doing so well!
# 30 Jul at 10:02 pm
Blessings and lots of encouragement is our prayer for you all today. xxxxxxxxxxxxxx
# 30 Jul at 10:03 pm
Great to hear of her progress
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