Ainsley Faith and God’s Grace

Ainsley Faith and God’s Grace Meet Ainsley Faith! Diagnosed with bilateral renal agenesis (BRA) at our 20-week ultrasound.

***Ainsley update***08/08/2026Ainsley has been doing very well! She’s still doing physical therapy once a week (unless s...
08/09/2026

***Ainsley update***
08/08/2026

Ainsley has been doing very well! She’s still doing physical therapy once a week (unless she’s sick or there’s a scheduling conflict). She hasn’t been sick hardly at all, and we’ve not taken that for granted!

At the end of June, she had an urology procedure where they inserted a catheter into her bladder through her urethra. Our hope was so start flushing saline into her bladder to slowly stretch it and get it ready for later use. (Since she was born without kidneys, she’s never used her bladder before. It’s very tiny and is only able to hold 3 mls of fluid. Three mls is probably an appropriate dose of Tylenol for an infant…it’s nothing.)

This process we’re wanting to do is called “bladder cycling”. A lot of mamas have been able to connect their child’s bladder tube to a feed pump and allow the pump to do most of the work while their kiddo is sleeping at nighttime. However, their kiddos typically have larger bladders than Ainsley and can have a Supra-pubic (SP) catheter placed. This is a bottom that sticks out on their abdomen and feeds directly into the bladder. Since Ainsley’s bladder is so, so small, this isn’t an option for her.

The hope is that we can stretch her bladder to be able to accommodate an SP catheter in the future. However, things are looking very grim right now.

The urologist wanted me to start flushing 3 mls at a time into Ainsley’s bladder. It’s been over a month now, and I haven’t been able to put that much in at once ever. In fact, we’ve quit cycling altogether for the time being.

Most of the kiddos that do bladder cycling experience bladder spasms. These are extremely painful—imagine a Charlie horse in your bladder…and it happens all day long. Another mama explained it to me like this: Ainsley’s bladder has been sleeping. But now having a catheter in there and trying to flush saline, it’s waking up. And there are ton of nerves in the bladder. Her brain and body don’t understand what’s going on—her bladder has never been used before—and it’s very confusing.

While trying to flush saline into Ainsley’s bladder with a syringe, she cries and asks me to pause. The process started out okay. Not great, but okay. It quickly went downhill after the first week. I worried that there was infection, but there doesn’t seem to be. I’m unable to use the feed pump bc the connections don’t work. The catheter in Ainsley’s bladder right now is unlike anything I’ve ever seen before. We think it’s an IV catheter? But I don’t know what adapter to buy that would connect to her feed bags. I bought don’t adapters in Amazon and was very hopeful. Unfortunately, they don’t work.

I’ve been working with Ainsley’s primary nurse and nephrologist to find out what adapters will work, but it’s been a painfully slow process. I have other mamas offering support and information about bladder cycling, but most started with SP catheters and different connections. (One mama had the same type of catheter, but she’s unsure of what type of adapter her team sent her. I have a picture of it but haven’t been able to find anything like it online.)

Right now, even having the catheter in Ainsley’s is painful. Diaper changes are rough—the slightest movement bothers her. It’s always in her; it coils inside her bladder, which is the only thing keeping it in her.

At the beginning of this process, she would cry in pain. After one “session”, I held her on my lap afterward to comfort her. I asked her if she wanted to p*e like Mommy and Big Sisters do. She nodded. I told her that if she wants to, we’ll need to keep flushing her bladder. I explained that I need to do it three times a day, and we’d only been doing it about once a day, sometimes every other day. I asked if she still wanted to do it, and she nodded again. Even through the pain, she understood.

This last week, she’s started telling me that she doesn’t want to use her bladder anymore. And I wish we could quit. This is so hard—seeing her in this much pain, knowing that I’m the one inflicting the pain. But hearing success story after success story of other kiddos who had tiny bladders, were able to increase them over time through cycling, and were able to have their bladders connected to their [donor] kidney later…it’s keeping me hopeful.

Right now, I’m waiting to hear back from SCH about connections. I think I may still order the couple of things I saw online that mighty work. The problem is, they’re not on Amazon, and it’ll take 5-7 days to ship. I held off two weeks ago bc I had hoped her team would get back to me before then. Well, that’s not happened. So mating I just cough up the little bit of money, even if it’s the wrong fit/size/product, in hopes that we can make progress with this journey?

I don’t know what to do. I’m stuck, and it’s really challenging.

Otherwise, Ainsley is doing well. She’s walking better and better and the time. Our family and friends are always commenting on how far she’s come. It’s been truly amazing to see. I never doubted that she would be able to walk. I knew in my heart that she would make it someday. But damn, was it a long, hard road. And here she is. Nearly running, skipping and jumping. It’s been the best experience ever.

So for now, please pray that this bladder cycling works out. This is the last piece that we need to work on in order for her to have as normal a life as possible. If it doesn’t work out, it’ll be okay. There are other options. But we want to try, and we want to give her a chance. But it sucks, and it’s hard. She’s definitely stronger than me.

Thank you for all the love, support, and well-wishes. ❣️ We will continue to share her journey!

***Ainsley update***06/06/2026I still remember posting an announcement about Ainsley’s diagnosis. I knew a lot of people...
08/09/2026

***Ainsley update***
06/06/2026

I still remember posting an announcement about Ainsley’s diagnosis. I knew a lot of people wouldn’t understand our decision to fight for her. We didn’t know if she would survive. Or whether she would want to. We had no idea how it would affect our lives. Would her sisters later resent me bc I made this choice? Would they be upset that their time with me was taken away bc she was so medically needy? Would Ainsley herself resent me bc of all the treatments required throughout her life? (Heck, I still wonder that and fear the possibility sometimes.)

I remember posting again shortly after that post that I had been accepted into the RAFT trial that could potentially save her life. I remember being separated from my family—my two daughters and husband. (Even beyond that, my mom, sister, in-laws, and friends.) I remember watching our girls change in front of my eyes on FaceTime. Being unable to sleep in California bc I had an entire bed to myself. Eating my three Ronald McDonald House meals a day alone. Learning to navigate the Bay Area and hospital grounds by myself.

Fast forward four years and she finally got her long-awaited kidney transplant. Fast forward another year and she graduated developmental preschool. Fast forward three months from now and she’ll enter kindergarten in general education, not special education.

That’s right. Our sweet Ainsley graduated PRESCHOOL yesterday. She spent almost two years at Black Lake Elementary (where Chad and I both went to school from kindergarten through 5th grade). It was one of the best ceremonies I’ve attended. I don’t typically subscribe to all the “graduations” that occur these days. (Do kindergarteners and first graders and second graders ALL really need to “graduate”???) But being that this was developmental preschool, the next step up from the birth-to-three program, it was a Really Big Deal.

Several of these kiddos were together for the last two years. (The year prior, Ainsley had attended Rochester Primary School for four months.) Several of them are going to Littlerock Elementary together next year, which I think is just too cool! They sang a song after they each received their certificates. Ainsley, the singer that she is, had almost the entire song memorized. There were “movements” involved, and it was one of the most precious things I’ve ever seen.

The preschool teacher said that this group was especially important to him. With them, he heard first words and saw first steps. I have no doubt that Ainsley’s first steps were some that he was referring to. She just started walking SIX months ago, and she’s already doing so well! (At PT this Tuesday, she started walking straighter. She has the tendency to hunch forward quite a bit, so standing straight up and seeing how tall she can be is also a Really Big Deal.)

In other news, Ainsley does have what I’m calling a “mild case of rejection”. Either prior to her transplant or just after, the team warned us that rejection is extremely common. It’s almost inevitable that transplant recipients experience it at some point in their lives. There are also varying degrees of it, so it’s not necessarily detrimental. In Ainsley’s case, it’s been caught early. She gets bi-weekly or monthly labs (depending on how things look), and recently one of the DSA (donor specific antibodies) came back positive.

I saw the results on my phone on a Friday afternoon. I guessed it meant rejection, but I didn’t have a chance to call the transplant nurse. Sure enough, she called me Monday to talk. I told her I was glad she called and that I had meant to call her, too. She told me to go ahead with what I wanted to talk to her about and then she would tell me what she called for. I questioned the DSA, and she said that was actually why she was calling.

She said the number was low and that we would get repeat labs along with additional labs. Those came back with low numbers as well, but they still want to move forward with a biopsy. Funnily enough, Ainsley is due for her one-year post-transplant biopsy. We had it scheduled for the day after Memorial Day. However, Ainsley got sick over Memorial weekend. I called the on-call anesthesiologist Monday night to discuss whether we should proceed or not. He said to go ahead and come in Tuesday morning (with a check-in time of 6:30 am!) and they would listen to her lungs.

Remember, Ainsley has “reactive airway disease”, aka: asthma. When she gets sick, she gets really nasty coughs. She doesn’t do very well with anesthesia, and sometimes she requires intubation. The anesthesia tends to give her bronchospasms. Per clevelandclinic.org:

“A bronchospasm (pronounced “BRONG-kuh-spaz-uhm”) is when the muscles that line your bronchi tighten. Your bronchi are the tubes that air travels through to get to your lungs. They connect your windpipe (trachea) to your lungs. If the muscles in your bronchi tighten or squeeze, your airways narrow. This limits how much oxygen your body receives.”

Since this happens even when she’s healthy, the anesthesiologists are usually quite reluctant to sedate her under poor conditions. Fortunately, the attending anesthesiologist that listened to her on Tuesday advised the team not to proceed. The nephrologist (kidney doctor) on the team was the same nephrologist who looked over Ainsley’s care the entire time she was in dialysis (in WA State). He agreed that getting the biopsy that day was not detrimental and could be postponed a few weeks. I was so relieved, and I was happy to drive home to Olympia.

At this point, the biopsy has not been rescheduled. We have increased one of her immunosuppressant medications (MMF) in hopes that her DSA/rejection numbers will decrease. The numbers didn’t change immediately, but we’re still hoping they will with the next round of labs. (The team didn’t want labs this week, but we will get labs next week.) I’m anxious to see if there’s been any change. I’m also anxious for her cough to get better so we can get her biopsy over and done with. (Anesthesia always makes me nervous, mostly bc it causes her so much anxiety being put in the procedure room.)

I will try to update again as soon we know anything else. Once again, thank you for following Ainsley on this amazing journey. She has been such a pistol, joy, and healthy kid. It’s amazing to see how far she’s come. I can’t wait to see how she progresses next year in kindergarten!

***Ainsley update***02/24/2026Ainsley has been doing very well! I’m currently at SCH in the Surgery Center Reception, wa...
02/24/2026

***Ainsley update***
02/24/2026

Ainsley has been doing very well!

I’m currently at SCH in the Surgery Center Reception, waiting for her as she undergoes a procedure.

Today, her urologist is performing a cystoscopy to check her transplanted kidney and—I think—take measurements. We’re hoping he can connect her ureter to her bladder in the near future while also staying connected her ureterostomy (where her ureter currently comes to the outside of her abdomen, allowing her kidney to drain urine into a diaper).

To briefly explain, the ureter is the tube that comes from the kidney and—typically—connects directly to the bladder. Since Ainsley has literally never used her bladder, it did not have the chance to grow, meaning it is very low in her pelvis. Since it is so low (below her public bone), her ureter may not reach that far. If not, we hope the urologist can place a supra public (SP) catheter into her bladder from outside of her abdomen. Using that catheter, we could then fill her bladder with a saline solution, gradually stretching it for potential future [normal] use.

More to come on her bladder later!

In other news, Ainsley is WALKING all over the place! She is still quite wobbly, which her rehab doctor thinks is more due to balance than her hip issues.

Hip issues recap: We found out recently that she has “coxa vera”, meaning her hips are angled less than they should be. This can cause waddling and limping, but we’re hoping we can treat it with stretching and continued walking.

Per Google, a quick summary of coxa vera:

“Coxa vara is a hip deformity characterized by a decreased angle between the femoral neck and shaft, typically causing limb shortening, a waddling gait or limp, and restricted hip motion. It is caused by congenital, developmental, or acquired factors (e.g., trauma, rickets)…”

Before Ainsley’s transplant, she had pretty weak bones. Because she was born completely without kidneys, her body was unable to sufficiently provide the hormones necessary for optimal bone health. We tried to offset this by providing her with supplements, including, cholecalciferol (Vitamin D) and paricalcitol (Zemplar). We also gave her daily human growth hormone (HGH) injections. However, there is nothing healthier for the body than actual, physical kidneys. (Also, it’s probable that the HGH injections caused the hip damage. 😖)

For now, we bring Ainsley’s wheelchair with us when we go to appointments. If we go to friends’ or family’s houses, we still bring her old friend, Quiet Car. When she’s at school, she mostly uses her classroom walker.

What else has been going on? She had her pre-K phone conference earlier this month. Actually, it was on her 5th birthday!!!!! (((Yes, our Big Girl turned FIVE!!!! Can you believe it?! Our miracle baby, after having been told she had zero chance of survival, turned five! Praise God.)))

Her teacher had nothing but wonderful things to say, and we are very encouraged that she will be kindergarten-ready in the fall. Come September, she will be united with Big Sisters at Littlerock Elementary. We cannot wait!

What else. Well, she is incredibly sassy! Mimi got to see just how stubborn Ainsley can be a few days ago. She wanted to sit on my lap, and after telling her three times that I needed her to wait, she turned away from me and said, “I’ll never sit on your lap EVER AGAIN.” From there, she proceeded to throw everything off of the coffee table. When I told her she needed to pick everything up, she said, “Never!” And it was all downhill from there.

She continued to shout, “Never!” whenever someone said something to her. She wouldn’t clean her mess, she wouldn’t stop shouting, even though everyone was trying to watch a movie…. Just “NEVER!” Oh, boy….

At that point, I needed to change her diaper. Daddy told her she needed to be nice and stop yelling, and she started to cry. After changing her diaper, I put her on my lap and told her that I never said she couldn’t be on my lap. I explained that she being mean and that it hurts feelings. She stopped crying, told me she understood, and then wanted to get down off my lap. She told me she wanted to go to the kitchen so she could be upset. Okay, Big Girl. She took her walker and went to go be by herself. 🤷🏻‍♀️

So that’s what we’re dealing with! Aside from those kinds of tantrums, she had been incredibly joyful—as always. She’s funny (hilarious, actually), smart, and kind…usually. 😜 She continues to bring laughter and smiles everywhere she goes. In fact, she made friends with some brothers while waiting in the lobby today. She immediately walked to them (because she’s walking now!) and said, “My name is Ainsley.” They looked at the fish together, “ran”, fell, and crawled a bit.

We got labs at the Oly SCH before heading up to Actual Seattle, and we’ll get results tomorrow. I anticipate things will be mostly normal. She’s had some detectable traces of specific viruses in her system, but nothing detrimental or crazy.

For now, I wait for her procedure to finish. I’ll try to post again soon once we know what the plan will be. In the mean time, please pray that The Plan will be as easy, smooth, and seamless as possible. (Bladder cycling can be a slow, tedious, painful, and long process.) We pray that we are blessed with the best news possible—that the urologist will be able to connect her ureter to her bladder.

Thank you all for continuing to check in! Love, hugs, and prayers. 💓

02/24/2026

***Ainsley update***
12/20/2025

I’ve been meaning to post forever, but that’s how it usually goes. 😉

Ainsley has been doing so well! She’s thriving in school and with outpatient PT. I received a progress report from her developmental preschool, and it was a bit discouraging. While most of it was good and showed that she was increasing her skills, there were a couple areas that she was either stagnant or regressing. This was partially due to her missing so many days (for labs, appointments, sicknesses, etc.) Her IEP meeting was about a week after I received the progress report, so I was nervous to meet.

When we got to her classroom for the meeting last week (December 12th), the whole gang was there:

1. Teacher
2. One-to-one paraeducator
3. PT
4. OT
5. District representative
6. One nurse
7. Another nurse
8. Vision teacher

Including us, there were 10 people in the room! Ainsley’s teacher said that he loves Ainsley’s IEP meetings because it’s like a party. I’m not sure if it’s because of how many people are in attendance or if it’s because it’s happy and lighthearted. Maybe it’s both. But it definitely feels like a party anytime Ainsley is around! (Also, her paraeducator had a tiny puppy in her lap, so that kind of made it a party, too!)

Her teacher noted that Ainsley no longer needed cognitive therapy. However, he created a goal for her so that she still had something to work on during their time together. Ainsley tends to have tantrums when she doesn’t get her way. (I honestly don’t know if this is typical. While Big Sisters had their small amount of tantrums, they really weren’t bad.) Her teacher is working on identifying emotions, not just the bad. He’s working to point out when she’s happy, sad, frustrated, etc. He said she even will say when she’s happy, which I’m not surprised. 🙂

In PT and OT, she is progressing. PT is still working to have Ainsley crawl one hand and one knee at a time. (She likes to bunny hop, and that’s how she goes fast.) She can do this, but she does her left hand and left knee at the same time instead of doing left hand and right knee. (Apparently what she needs to work on is contralateral movement. I can’t remember if what she’s doing is bilateral? PT lingo….)

With OT, Ainsley is working to make a closed circle. What she likes to do is make a circle and keep circling, over and over and over again. She hasn’t grasped the concept of making a circle, closing the loop, and STOPPING. However, she can make a straight line, both vertical and horizontal. (Last time I checked, she wasn’t able to. This is part of why I was worried she wouldn’t be kindergarten-ready by the end of the school year.) The OT is also trying to get Ainsley to make a square and a smiley face. She seems confident that she’ll be able to do this with practice, both at school and at home.

The nurses were present at the meeting to discuss Ainsley’s needs. These nurses haven’t been super involved with Ainsley, but they’ll come to the room if she needs assistance with anything G-tube related. While she’s 100% G-tube fed, she hasn’t needed formula at school. They anticipated and acknowledged that that will change once she goes into kindergarten, but they said we’ll talk about that more later. (They said “next year in kindergarten”, and that was so lovely to hear!)

Ainsley’s vision teacher stated Ainsley is still needing help visually with cluttered backgrounds. She’s providing therapy to progress Ainsley in that area. She said that she’s decreased the time she’s spent with her since last year, but that’s been because Ainsley is doing better. This teacher already works at Big Sister’s school, so she’ll continue to work with Ainsley next year! (PT and OT said that as well. I was so relieved and excited to hear that news!)

The teacher had previously said that Ainsley and two other students in her class will attend LRE (Big Sister’s school) for kindergarten. During this meeting, he said there were FIVE preschoolers that would transition to LRE. I asked him to clarify that statement, and he said Ainsley and two others would be in general education, whereas two other students would be in special education. (Note: Several times during the meeting, he talked about her being ready for gen ed. Again, that was such a relief! I hadn’t necessarily considered her being in special ed; I just assumed she would attend LRE. If anything, I thought she would need preschool for one more year and then LRE/Kindergarten after that!)

LRE didn’t previously have a special education class. I think in preparation for these preschoolers, that changed. I’m so glad that Ainsley will know four other students, and she’ll get to grow and develop with them. It is so amazing to know and see and hear how far she’s come. With those students, also! (I know one of the mamas and her preschooler. She already has another kiddo at LRE, and I’ve seen her there while picking up Big Sisters. I love that I’ll be able to continue seeing her there and be able to discuss her daughter’s and Ainsley’s next adventure!)

Finally, last but not least…. Ainsley…WALKED! She ACTUALLY walked! I mean, she IS walking! On Monday, December 15th, she took a few steps toward me. I can’t even remember how it started. I was sitting on the floor and she was in front of me. I think I was trying to get her to do “statue”, standing still, which is what her outpatient PT has been working on with her. She did statue and then quickly took 2-3 steps toward me. I had her stand up and do it again. My father-in-law saw it this time. The next time, she did 4-5 steps. She did it again, and my mother-in-law saw it. From there, she kept progressing! She did 6-7 steps, then 10 steps, then 15 steps…all the way up to 25 steps! It was so, so amazing; we were so caught off guard by this event.

Ainsley started cruising around furniture last year, and at that time we thought she would walk by Christmas. She didn’t, and that was fine. But when she started walking better with assistance and balancing better a few months ago, again, we thought she’d walk by THIS Christmas. As she continued needing assistance, I changed my mindset…maybe she’d walk by her birthday next year. All of her development and progress has been so amazing to walk that I try not to put a timeframe on things. She’s always, ALWAYS gone at her own pace, and she’s also always progressed. No matter what. No regressing, no backpeddling (with the exception of the muscle and strength she lost after her transplant complications in May).

So when she walked on Monday…I was shocked. DELIGHTFULLY shocked. Tuesday, she didn’t walk so much, but Wednesday she had outpatient PT. There, she walked back and forth between me and the therapist. She walked up to 35 steps, I believe. And that night…I walked behind her as we were leaving my in-laws’. She took 68 steps before finally losing balance and sliding down my legs, as I was close behind her. From there, she got up and walked probably another 68 steps to the garage door.

Now, she’s getting stronger and stronger. I love that, even from Monday, she was able to stop while she’s walking, wobble, regain her balance, and continue walking. That’s such a big deal! After all her “statue”, the work has really paid off! Also, she’s always loved to jump in place and also squat. She’s got incredibly strong legs, and I believe all this has built the framework necessary to walk.

Thank you for reading this update and coming along with us on this wonderful journey. With all that Ainsley has been through, we’re in awe of her continued joy. Even when she has to get her weekly labs–she looks forward to seeing her favorite phlebotomists and recovers quickly after the “poke”. (Also, they love her so much that they almost always give her a prize after.)

Until next time…merry Christmas and happy New Year!!!!

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