Conner’s heart Journey

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Manning, IA
Conner’s heart Journey

Conner is a 3 year old boy who was diagnosed with dialated cardiomyopathy and heart failure at 18 months old.

Conner's heart function has slightly improved, he made it home after 357 days of being in the hospital 💙

04/22/2026

Update on Conner 💙

As of April 14th Conner is no longer on the transplant list!! What a MIRACLE. This however does mean that all the time spent in the hospital will no longer count towards time on the list if anything were to occur in the future. Conner’s heart is “normal functioning” his labs look amazing and over all we are so happy with his recovery. They have adjusted a couple medications. He will follow up in 3 months. As of right now, Conner will continue on these medications for the next year.
I get some questions regarding what things look like now that Conner is recovered from being in heart failure. Because Conner does have the TTN mutation his heart could change at any time and go back down hill (we pray things continue as they are) Our goal for Conner is to go as long as he possibly can without this happening or having to go through transplant if at all have it be a couple years from now.

Today Conner saw the Cardiac developmental clinic. Specifically meeting with Dr. Castillo gave us hope for Conner’s near future. Now that Conner’s heart condition is in a positive spot we are now going to be focusing on Conner’s autism diagnosis. Conner has been referred to the psychologist at Children’s and will follow up with Dr. Castillo not just with the cardiac clinic but at his own office as well. It’s amazing what a Dr. that sits there and listens to every single concern you have for your child can do!

04/08/2026

Update on Conner 💙

It’s been a while since I last posted so I thought I would jump on and do a quick update.

Conner started preschool at the end of March! He loves it so much. He has been working hard in speech continuing to learn and use his communication device as well as learning to try to say words. He continues to work hard in OT.

Conner sees heart team next week and the cardiac Neuro development clinic later this month.

We are so proud of Conner and his continued hard work!

03/12/2026

Our miracle Boy is turning 3 on the 23rd!!

Let’s celebrate Conner with a card shower!

His address is
Conner Cook
60 Blaine street
Manning, IA 51455

03/02/2026

On Friday, Conner was diagnosed with Autism.

This diagnosis gives us clarity, direction, and tools to support him as he grows. It doesn’t change how amazing he is. It doesn’t change how much he is loved. He is bright, Handsome, and loving.

We will always advocate for him, celebrate him, and make sure he knows he is valued exactly as he is.

Thank you for being part of Conner strong. 💙

02/25/2026

Conner update 💙

Conner is truly a miracle boy!! We have nothing but good news (exactly what we need in our lives right now) His labs look the best they ever have! His echo shows his heart is near almost normal functioning.
They are taking him off blood thinners. His next heart appointment is in April. If all goes well at this appointment they will start the process of taking him off the transplant list.

Conner’s next appointment is Friday, he has his autism evaluation.

02/24/2026

Please keep Conner in your thoughts as we head to children’s for his heart team appointments. He will have labs, an echo, ekg and see the heart team 💙

01/28/2026

Conner update 💙

Today Conner had Labs drawn, an echo and ekg done. His Labs look great! His pro-BNP is down to 41. His echo is continuing to stay stable and his ekg looked good. They are taking him off of lasix. Here comes the part we never thought we would see in our future after hearing Conner needed a transplant- Conner is doing so good and there’s no sign of declining. The talk is to get him off the transplant list in the near future. While this is AMAZING news it’s also hard for us to think that Conner spent so long waiting. If he were to need to be listed again in the future the process would completely start over. His next appointment will be in February and his next appointment with his dr. home will be his 3 year wellchild in March unless other concerns arise.

I debated sharing this part of Conner’s journey but I thought it would be important for other people to better understand Conner as he continues on his Journey:
Before Conner went into the hospital Joe and I had questioned some delays in his speech and saw some other things that questioned as to if Conner may be on the autism spectrum. While in the hospital Conner received OT, PT and speech.

After being discharged from the hospital we battled different behaviors as Conner adjusted at home. After a short time we brought our concerns to Dr Courtney. (She has been nothing but supportive through this all and we couldn’t ask for better) a pre-screening was done and Conner scored an 11 when a typical 2 year old would score a 3 or lower. She saw our concerns and has helped us on to get more support. Along with Dr. Courtney we have discussed things with the psychologist at children’s. Conner is currently on the waitlist for an autism screening at children’s. As we see things “It’s Conner’s world and we are living in it”

He’s currently in OT and speech. In OT he’s currently being evaluated to establish new goals and working on fine motor skills. In speech he’s working on learning to use his Communication Device. Some people ask “wouldn’t this restrict him from learning to use his words?” in Conner’s case the answer is No. This encourages Conner to repeat the words he’s using on the device.

Your love and support for Conner never goes unnoticed! 💙

💙

01/27/2026

Please keep Conner in your thoughts as he goes tomorrow for his labs, echocardiogram, ekg as well as seeing the cardiologist and heart failure team 🙏

12/24/2025

Conner update-

Conner went to children’s yesterday for his EEG, echocardiogram, labs and to meet with his Heart failure and cardiology team. His echo is stable and his labs looked good. They did make a couple med changes, both were a typical change for being on them. Truly a miracle. We are so blessed to be able to have Conner home for Christmas and spend it with family.

Overall Conner has been adjusting well. He loves playing with the dogs and his favorite thing is going to visit his GIGI.

He has started OT, we will be working on different sensory and behavioral things. He also continues speech. He has shown interest in a communication device so we are in the trial process. We go back next Tuesday as it should be in. We are hoping this helps Conner feel better and less frustrated with his communication.

Due to cold and flu season we will go monthly for follow ups and continue with his P*P back home as well!

11/18/2025

Conner update 💙

Conner had his heart appointments today. They did labs, an echo, ekg and he saw the heart team. Conners labs looked GREAT. Much better than a couple weeks ago when his pro-BNP was trending up. It’s now much lower. His echo is stable!

Conner is stable enough to go back in a month!

11/08/2025

Conner update 💙

Conner had his speech evaluation today. He loved every minute of it, and starts going weekly in two weeks. She will be working on trying to get Conner to be more expressive as well as working on finding a communication device that is the right fit for him.

As some know Conner hasn’t said very many words compared to other kids his age.. he has been trying to repeat what his sisters say 🫣 as well as signing a few things such as more,please and help.

11/05/2025

Conner update 💙

Conner had his first heart clinic appointment today. This consisted of an ekg, an echo, blood work and seeing the team.

His labs are stable. His pro-BNP did trend up, however it’s still considered in the “normal range” this is something they will watch closely.

His echo did not go how we expected, when he had them done in the hospital he would lay there and allow them to do it. Today that was not the case. He did end up watching a movie and letting the guy do it after a short time. His echo had no changes from his previous one so that is a good!!

Dr. cole and Val were so excited to see conner! When cole walked in the room Conner ran and gave him a big hug, he was just as excited to see Val. They upped one of his heart meds as well as put him on an oral blood thinner that somehow was not put in the system before leaving the hospital and we go back in two weeks to the heart clinic and back to Dr. Courtney next week!

I must add Conner got to surprise all of the CCU nurses on the floor today. Instant tears as he walked around giving his best Conner hugs.. he was a huge part of the CCU this last year and is greatly missed!

Please pray Conner continues to remain stable 💙

Address

Manning, IA
51455

Website

https://www.caringbridge.org/site/c5355601-0d9c-11f0-94a0-bd1136f90fd7?utm_source=website_share&utm_medium=share_button&

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