Aubree Breathes Updates

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Aubree Breathes Updates Here you can find updates instead of me texting people. As you can imagine it gets exhausting!

31/03/2023

Sorry folks for the late update! I thought I had! Aubree did very good for the hospital stay and we had no major reactions to the infusion. She has been just taking it easy on her spring break and the pain is continuing to go down!

We did end up upping her infusion amount so hopefully this will last longer.

Thanks for all your support and phone calls!

ONWARD AND UPWARD!!!!!!!!

21/03/2023

3/21/23 UPDATE:
Aubree was a 10 on her pain level this morning so the doctor wants her to get admitted ASAP to the UofM for her infusion of Bisphosphonate treatment. Since her last round which was only 3 months ago had somewhat of a bad painful reaction we will be staying there for a few days. We will be upping the dose as well to see if we can get it to last longer (should be 6 month's +). We will get to meet with the pain management team as well as find another therapy for Aubree's CF....

OH YEAH... in case you forgot... she has Cystic Fibrosis!
Treatments include doing a vest the applies pressure and shakes her upper body. So as you can imagine we have not been able to perform these since July of last year. Her PFT tests in January went down quite a bit so looking into a new machine that is hard to get approved unless you can prove you need it and what better way to do that than in the hospital!

More to come Thursday after we get to the hospital!

ONWARD AND UPWARD!!!!!!!!!!!!!

15/03/2023

Hello all!
Time for a bit of an update…. Thought we had my girl back and it has been great!!!!

Aubree has taken a turn once again and is in a great deal of pain. I have been working with the Endocrinologist once again.

We went and got labs last week along with X-rays. They showed her T9 is worse than 3.5 months ago and too much cartilage in the T3-T5 to tell. Since her pain level is once again a 10 we need to take action. Her vitamin D is again low so we are starting a prescription to help. All of her other labs came back normal thank god!

On the 27th we will be completing another infusion. This is the 4 hour therapy we did before. Unfortunately it will make her feel like she got tan over by a semi…. So we will be on Spring break getting her through this!

Working with the school to keep her in school and take a van back and forth will hopefully help!!!

So positive thoughts my friends and as I always say….

ONWARD AND UPWARD 😉

Had our big day at the UofM today for a check-up! Overall very good and everything is improving. Her pain level is a one...
05/01/2023

Had our big day at the UofM today for a check-up! Overall very good and everything is improving. Her pain level is a one and she no longer needs a brace FT! We are headed back in-person school tomorrow and she is so very excited!

NOW we need to concentrate on her CF as it has been on the back burner for months. Her Pulmonary Function Test which tests how much air comes into the lungs and gets pushed out has dropped 40%. So staying healthy until we get that up will be crucial. We have been cleared to start the vest but have to set back settings to when she was a baby to make sure there is not too much pressure and cause another vertebrae break. We also added in a new nebulizer med.

We go back in April for CF annuals, glucose testing, dexa scan, MRI and X-rays. We will decide then if we need another infusion to keep up with pain.

Onward and upward! Here is to 2023 and BYE to 2022!!!

Much love ❤️

02/12/2022

12/2 Update:
Well it turns out the ER the other night has found another fracture but now in her hip bone. It has been an extremely hard couple of days dealing with the pain of that and the infusion. I guess infusions can make you feel like you got ran over by a truck. Aubree had a very high fever and was very dehydrated, couldn't walk, absolutely nothing. But happy to report is much better today thanks to a grandma visit and is painting :) And let's be honest, I cant carry her, even though I try!

Waiting on getting into a different specialist maybe next week about the hips and may need to do another body x-ray to see if anything else has developed.

Proud to say her calcium is within normal today! Such a good sign! She isn't really eating or wanting to drink much yet, but we keep pushing it!

We have another calcium draw on Monday and if all is good she can hopefully ween off the 6000mg of calcium daily!

ONWARD AND UPWARD!!!!!!
Much love to you all :)

Minor setback with the infusion tonight. She is in a lot of pain. Waiting on tests and a plan. She can’t walk due to the...
30/11/2022

Minor setback with the infusion tonight. She is in a lot of pain. Waiting on tests and a plan. She can’t walk due to the pain. Let’s just hope it is not too much longer.

Well folks we made it thru our first infusion and she did great! Was tired as we were there 5 hours! Bit of ache pain ov...
29/11/2022

Well folks we made it thru our first infusion and she did great! Was tired as we were there 5 hours! Bit of ache pain over night and pain in her arm is pretty bad this morning. We will check in with the doctor today. Hopefully this will lead to pain free! ONWARD AND UPWARD!

We had a few more elf’s come and sprinkle for cheer for Aubree!!! We thank you! Aubree has a big day tomorrow as we go ...
27/11/2022

We had a few more elf’s come and sprinkle for cheer for Aubree!!! We thank you!

Aubree has a big day tomorrow as we go back to the UofM. We will start her first infusion where it will take all the calcium in her body and help rebuild the spine. She has been taking 6000 mg of calcium daily and will continue to make sure she doesn’t deplete all of the calcium. We will monitor and do labs every other day till Monday.

We thank you all again! It has been a roller coaster for sure but as we always say ONWARD AND UPWARD!

I have been a bit behind this week in thanking our little elf’s!!!! Aubree and Ashlynn will have some more fun things to...
23/11/2022

I have been a bit behind this week in thanking our little elf’s!!!! Aubree and Ashlynn will have some more fun things to do during the Thanksgiving break! Thank you so much for keeping Aubree’s spirits up!

Oh will we have fun making hot chocolate bombs! Thanks elf for a fun Saturday drop off!
20/11/2022

Oh will we have fun making hot chocolate bombs! Thanks elf for a fun Saturday drop off!

18/11/2022

11/18 Update!

Hello everyone :)

Not too much of an update, as we still don't have all the answers at this point. We are awaiting some more test results. We will follow the oncology and nuero docs from here and run more scans and imaging to see if any tumors develop and blood-work to keep ruling out possibilities.

I spent a great of time on the phone with Endo and Oncology docs this week. What is being told now is that any child under 18 that has fractures of the vertebrae is considered to have Osteoporosis. In Aubree's case they are calling it unique and a not typical case as labs have come back normal. Since we went from 1 broken vertebrae in September to 5 as of October we need to still figure out why this is happening. They still tell me that they can't rule out anything only that it is unlikely..... Must be a doc thing?

What we are going to focus on at this time is pain management. What Ryan and I have elected to do is a Bisphosphonate Infusion. This will allow the infusion to move into the bloodstream onto the bone surface and help prevent fractures by decreasing bone breakdown. They increase bone mineral density, improve bone strength, and enhance mobility. This might also help alleviate the bone pain that Aubree has. There have been studies in Canada for children and they have been positive. We would normally go in for a 72 hours stay for the infusion, but hospitals are jam packed with sick kids right now. The oncologist thinks that with our knowledge and comfort having CF and all that entails, we can do this as an out-patient and watch her and get labs at a place around here (YAY)!

Waiting on the infusion team to coordinate and we need to start a high calcium and high vitamin D for 7 days prior and 7 days after.

I can't thank you all enough for the kind words and support! Much love :)

Oh and Aubree made it through a full day yesterday at school!!!!

ONWARD AND UPWARD!!!

Thanks Elf for the amazing fruit basket!!! Much appreciated 😊
18/11/2022

Thanks Elf for the amazing fruit basket!!! Much appreciated 😊

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