Friday March 29,2019

It has been a couple weeks since discharge from Ava’s last surgery, it has been busy in this household. We have had our ups and downs.

We had follow ups right away with her pediatrician. Her bum developed a severe diaper rash- and I mean severe…😩 she got open sores to where we needed dressings. We had to take her couple times to her doctor and started to use a steroid cream. We have been doing sitz baths and literally blow drying her bottom. Finally we are seeing healing and improvement🙏🏼 has been a long last week needless to say, couldn’t take Ava out anywhere, and her bum hurt her. She had been pooping a bunch, and has got constipated a couple times. Her rectum occasionally prolapses, something we need to watch closely. Landon and I have been trying to see what Ava’s new normal is with her bowel movements and adjusting her diet accordingly. She is slowly adapting to her bottom by gaining strength with her muscle, as it was damaged so badly last year with scar tissue. She is on laxatives daily, and will most likely be for the rest of her life. But we are seeing positive results from her bum right now 🙏🏼❤️

Her abdominal incisions are healing up nicely. When we got home couple weeks ago, she wanted to just “go go go”. We had to hold her back a bit which is so hard for a toddler. She started to walk a bunch the next day we were home. She’s now cruising around the house. She can’t get enough of it!

We follow up with her pediatrician next week, and her surgeon in a couple weeks.

We are so glad to get over that big surgery, it has just set in to Landon and I that Ava doesn’t have her ostomy anymore.. as we have been so busy with her bum sores. Seeing her stomach without the ostomy makes us so happy. Her poor body is just covered in big scars, but all a reminder of each hurdle Ava has overcome and the strength she has built. This girl is the definition of a warrior. She will be able to show off her scars proud, and not hide them. It is so nice to finally be able to dress her in a “T-shirt and pants”. With her ostomy, we had to use diaper shirts all the time as she would grab it and it would catch on things. This is something people might take for granted dressing their kids in. I also converted our 2 diaper bags (one medical/supply bag) into one big backpack. That felt surreal. Will be so much nicer to take her out. Once we are through the sitz baths with her bum, we will look forward to an outing as a family together.

We thank everyone who has been sending their kind words. If we haven’t been able to get back, just know we truly appreciate each and everyone who has reached out. So grateful for Ava’s army ❤️

Here is a an article that explains a lot of what Ava is going through right now after her ostomy reversal.

2 thoughts on “Friday March 29,2019

  1. Such a beautiful little girl, she defines resilience. 🥰. Looking forward to the day you can pop onto the unit with your sweet gal toddling about and your one diaper bag 🎉


  2. Thankyou again for the update on precious Ava! She is keeping you busy! Hope her bottom continues to heal! She has had more than her fair share of pain! So wonderful to see her walking and such a big smile on her face! Her hair is getting so long and beautiful! Not sure she can get get any cuter! Hope you will soon be able to get outside and enjoy some warm sun! Will continue to pray for complete healing for Ava!


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