PT Pain

19 Jul at 8:45 pm by Anita MacDonald

We tripped in to UNMC for the first time since discharge. Â It was for aÂ PhysicalÂ Therapy (PT) session. Â Aria’s least favourite thing too do. Â Oddly enough it is also mine.

This morning the nurse came to the apartment to draw bloods. Â Also a fairly vile experience. Â Aria is SO BRAVE! Â They have to use a needle to find a vein to draw the blood. Â She holds out her hand to the nurse and says ouch ouch but doesn’t fight or kick or anything like that. Â Super brave.

PT and feeding therapy are two things everyone else is keen about but I couldn’t give a monkeys about. Â Why? Â Cause Aria doesn’t. Â Aria doesn’t care that she doesn’t walk and it quite happy not eating. Â And we are happy cause she isn’t on TPN anymore that was destroying her liver. She is on her nose noodle juice. Â Boring old formula going straight into her brand new bowel and she is doing quite nicely thanks. Â Despite what the front page of the Manukau Courier might report she isn’t eating, rather tasting foods and we are ok with that.

We have to choose if we want to do mean feed therapy or nice feeding therapy. Â Errrrr- think we will choose the nice one, this poor girl has been thru enough! Â Feeding therapy is where they teach kids to eat.

Back to PT. Â Aria had a fairly wonderful meltdown and pretty much refused to do anything. Â I sat there almost crying cause they wanted her to do things she really really didn’t want to do. Â Aria is so weak, it is so disappointing that all the effort we put into her walking is gone and we have to start again. Â I feel so bad for her.

The PT lady sat Aria on her knee and got Aria to reach forward and down to pick up some balls on the floor. Â She said “Aria, reach down and pick up the purple ball” Â Guess what I did?? Â I reached down and picked up the ball FOR ARIA and handed it to her! Â DUH- so NOT the point of the exercise!! Â As stupid as I felt it made me realise this instinct I have to help Aria and bring her things but really I am not helping her at all cause she needs to learn to do things for herself. Â I have sat by her bed for months wanting to do what little I could for her and now that all needs to change.

Aria did warm up a little by the end of the session but spend most of the time crying for her pushchair/pram/stroller. Â The PT therapist suggested that perhaps Hamish and I could think about sitting in the waiting room next time. Â Or at least using that as a motivator to get Aria to do stuff. Â Sounds horrible right? Â But this girl does not want to move her tired body. Â Fair enough- it have been invaded how many times? Â Poor Sweeties.

FYI- we are still having a great time at home 🙂

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20 Responses to “PT Pain”

# 19 Jul at 8:52 pm
Jan says:
You guys I just so can hear what you are saying but you have got it so right. Go with your instinct. Mothers just KNOW. You also understand that you to have to make some adjustments but there is no rush everyhing will come when that beautiful little girl is ready. Love to you all. Take Care
# 19 Jul at 9:04 pm
joyce says:
I agree with Jan and go with your instinct. You have been with her every step of the long journey and probally know more than the Pt therapist. She will have to endure some pain when she gets moving more but rest is needed too. I cannot imagine a body going thru what she has and done so great. As a mom I know how you hurt for her too. This is what we will pray for now and it will come.Praying not only for Aria but all of you and the therapist.
# 19 Jul at 9:06 pm
Jen Cato says:
They need to remember that she’s been through so much and they all need to chill out. Take your time. If Aria is in no mood, therapy won’t help. 🙁 Take your time sweetie… you’re doing just fine. We’re thinking of you and praying still..always will be. <3 God Bless!
# 19 Jul at 9:30 pm
Erika White says:
I love that you picked up the ball for her – I’m laughing so hard… really!!! I so get it! We almost put Eme in the mean feeding clinic (soooo close), but couldn’t get funding approved. The team really wanted her to do it, but I was with you all along – the formula is perfectly safe, she’s fine with it, I’m fine with it… she’ll eat in due time, when she’s ready. I’m glad to hear your experiencing transplant on the other side 🙂
# 19 Jul at 10:12 pm
Joan Marshall says:
Go with what you feel is right and of course it is instinct to pick the ball up. Perhaps go along with the therapist (who is only trying to help even though it must feel that Aria’s being gently forced) just once and go out of the room, but for a very short time and see what happens. You have Aria all day and night now, and you have to pick up the pieces and I’m sure you will know when the time is right to progress. Love Joan
# 19 Jul at 10:16 pm
Kathleen and Anita says:
“Lord, Your Word says that You give grace for EVERY need, so we ask You for Physical Therapy grace and Feeding Therapy grace because that is what the MacDonald family needs right now! Thank You Lord for hearing and answering our prayer. Amen”
# 19 Jul at 10:47 pm
Yvonne RRN says:
ATM….no NOT a money machine or hole in the wall.

ARIA THE MIRACLE

anita, how I agree with you. You picking up the purple ball was a natural instinct & how could you NOT help little Aria who has been thru so much.
Afterall Rome wasn’t built in a day!
One goota crawl before walking.
She has made great strides to get where she is, so naturally she has to adjust & redo all these ‘little’ things in her own time.

Just being home is a miracle & her instincts will kick in to get & do what she wants as time goes by.
A baby goes from formula to tasting before actually liking & eating foods & her little body has to go thru this process.

Trouble is the therapists who mean well probably see her as a 4yr old who should be doing this & that.

Her small body needs to work to recover from all she’s been thru & work on accepting the new organs & learning what they can do for her.

What’s the rush??

You content, Aria content so now go at your own pace.

You are all doing just great.
# 19 Jul at 11:03 pm
Sarah says:
GO with what feels right – you and Aria are now learning how to be ‘normal’ and this takes time, it is a happy thing that you get to do this!!!!
# 19 Jul at 11:13 pm
Kathrine says:
I too would have picked up the purple ball. Your Aria is wonderful and it is great to see how far you have all come.
# 19 Jul at 11:15 pm
Samantha Sutherland says:
Hee hee I am laughing at your picking up the ball for Aria! So natural! It is so hard to make her do the less medical things isn’t it – sometimes you have to let some things happen in their own time. Yes it is important that one day she eats properly but she also needs to ‘discover’ food and her appetite for it. It is probably very difficult for her to feel hungry when she is having noodle juice – it was that way for Lara. She always had a full tummy so what is the motivation to eat and what is your motivation to get her to eat – you have had to force her to do so many yukky things that it is just too hard and painful for you.

Mix it up and take a bit of what they say and a bit of what you feel and work out your own plan – you will instinctively know what will work for Aria – she is an individual.
# 19 Jul at 11:32 pm
iliganoa says:
Anita you are always sharing your feelings and this makes it bearable for you to clean the slate for the next morning. “Great is God’s faithfulness – morning by morning new mercies I see, all I have needed thy hand has provided. Great is thy faithfulness, Lord unto me.”
# 19 Jul at 11:37 pm
Mary says:
I too loved and laughed at the purple ball bit. I so agree with all the above comments, poor wee sweetie, she and you will get there in time, crumbs, look what you have all achieved in the last four years, despite the advice you were given at the beginning.
# 20 Jul at 2:10 am
Renee says:
“Physio-terrorist” as my husband puts it!

Don’t know how it works in the states, but do they do home visits? Perhaps Aria will be more at ease at home? Keeping it fun and functional helps- toys/games involving the whanau, mum’s turn, dad’s turn, aria’s, asher’s…
I think a good PT session is probably one in which gains were made without even knowing you had therapy- Just like when Aria propped herself and reached for a toy in your Day 2 post 🙂

You’re helping her get stronger everyday, so hope it’ll be more fun for Aria and less stressful next time!
# 20 Jul at 2:15 am
Judy Palmer says:
Slow and sure wins the race. Go with your instincts as parents and I’m sure Aria will do well,(I would have been tempted to pick up the ball also). Perhaps you could make up games based on the P Therapist’s exercises and then next session Aria might enjoy herself and surprise everyone by how well she is doing.Just a suggestion. Blessings, Judy.
# 20 Jul at 3:42 am
Raylene says:
So hard being the mum! Aria has made just sooo much progress with your help Do as you need to do and you feel ok doing. I have just so much admiration for your whole family. Just amazing the four of you.xx
# 20 Jul at 4:40 am
Jodee Reid says:
It does not make good front page news ‘ Aria now digesting’!!!! We don’t care if our kids never eat as long as they can digest and it sounds like she is doing just fine. I’m sure one day Aria will decide she wants to do what the rest of you are doing. That probably goes for walking too and I’m sure she is exhausted from everything. One day she will want to chase her brother around. I love the ball story too – we do that with Matisse, get her things when she is not hooked up and suddenly realise that she could have actually got that herself – it is years of training – hard to un-do in a few PT sessions 🙂 Anyway sounds like Aria is doing great so you are def doing something right!!!!
# 20 Jul at 11:12 am
Tiffany Keller says:
I think Aria’s doctors need to chill out & give her some time to adjust! She has been through so much already! Go with your instinct Anita! I’m glad that things are still going well at home! God Bless!
# 20 Jul at 1:39 pm
Kathy _ Rotorua says:
Good on you picking the ball up for Aria, mothers always have that gut feeling, and when Aria is ready she will do what ever they ask her to do, she knows when she can and cannot do things, she has accomplished so much already.
# 20 Jul at 10:30 pm
susan says:
Yeah teaching a child to eat when they have been nil by mouth or whatever is a hard road! but hey nose noodle juice sounds way better than tpn. And i love the name nose noodle juice. We never had cool names like that, just boring hospital ones 🙂
# 21 Jul at 2:17 am
Jo says:
You’re an awesome Mum! Keep going. You know how much Aria can take and what she has been through more than any therapist. You can introduce stuff for Aria as you think it is appropriate. Keep having fun as a family. You have so earnt this special time. God bless, Jo