If you’ve been a long time reader, you know my son Gannon has faced many health issues in his 2 years of life starting with hospitalization at 6 weeks old. Many tests, procedures, surgeries, later, he was finally diagnosed with something called anal achalasia which is also a form of Hirschprungs disease. The nerves in his anus don’t allow for relaxation and passing of stool causing extremely painful defecation, bloating, abdominal pain, and constipation. Gannon’s quality of life did a total 180 after he received botox to correct this malformation and other than varying degrees of constipation and a speech delay, Gannon lives a fairly normal life.
Though he tested negative for any genetic disorder, there is still a suspicion Gannon has a connective tissue disorder that can only be diagnosed as he gets older – closer to 6 years old or so. This causes various other health issues that require monitoring.
Early July we had an appointment day in Iowa City. We followed up with cardiology, we got an echo of his heart, and we saw urology. There was some concern that Gannon had dilated blood vessels in his heart (common with the connective tissue disorder) but those have since resolved. There was also some concern that Gannon has a hole in his heart called a PFO (patent foramen ovale) which is pretty common actually. BOTH of these issues have (mostly) resolved and Gannon no longer needs yearly cardiology follow up! They will see him again when he is 5!
Gannon also was born with undescended testicles and bilateral inguinal hernias. He underwent a surgery to correct this on his first birthday that was unfortunately unsuccessful. The right testicle will not work or function normally and is essentially “dead.” We follow up with urology to make sure that there aren’t any complications with that. We see Dr. Storm and if your child EVER needs a urologist, we 10/10 recommend him. He is our favorite doctor in Iowa City. He also said no need to follow up until kindergarten!
Gannon still gets REALLY sick and I wouldn’t be surprised if he struggles with asthma as he gets older. He’s had pneumonia twice now and has troubles breathing when he gets a cold. He’s regularly on steroids and breathing treatments or antibiotics for an ear infection.
Gannon still goes to speech therapy every Thursday which he just LOVES! We’ve seen so much progress in the past month it just blows my mind. I’m so proud of how far he has come and how hard he is working! We’ve fought so hard to get him to this point.
All of that fighting for answers and back and forth has all been worth it to get to this point where Gannon lives mostly pain free and is a normal kiddo! He is so goofy and always has us laughing. He loves legos, onion rings, and to play by himself. He melts any time he sees a baby and gets along with just about everyone. We have made ZERO progress on potty training but I’m not expecting any miracles in that department any time soon!
Many of you have been wondering about how he is doing since his bout of pneumonia last week and we honestly aren’t 100% positive it was pneumonia – Carver also started getting sick about a full week later with the same exact symptoms – so did several other kids at daycare. So who knows. Either way they are both coughing and hacking still but we are FEVER FREE and I’ve been home all week with them. It’s a very distinct loose congested cough. Gannon’s coughing fits are over which thank goodness – that was so hard to watch.
Thanks for reading friends!
To read more about Gannon, I’ve linked a few blog posts here:
GANNON UPDATE: The GENETIC RESULTS ARE IN!
Gannon Update + Botox didn’t work + Tuesday AM update
Milwaukee Day 1: Bowel Clean Out
Milwaukee Day 2: Overnight and Pre-Op
Milwaukee Day 2: A New Approach
Milwaukee Day 3: A DIAGNOSIS and treatment plan!
Milwaukee Day 3: MRI, COVID, and Evening Update
Milwaukee Day 4: HOME + MRI Results
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So glad Gannon and Carver are doing better. Nothing worse for a parent than to see their baby struggle and be sick…no matter the age of the baby!!! Yay for so many doctor appointments waiting for YEARS!!! Waiting without a “real” answer is always hard, but as long he is his happy self until you can get those answers, that is something to celebrate!! You are such a wonderful mom to keep pushing when the doctors weren’t giving you answers that made any sense to you! So many just accept what the doctors say, even when their words make no sense.
He is such a trooper and so cute!! And God gave him a nurse for a Mom!! WOW! Your boys are a joy to watch. Thanks for the update about his pneumonia, so glad he is feeling better. He has a pretty special Grandma too!
My heart goes out to all of you. It is so hard to have a sick child. Does he have food allergy issues? I know dairy always made my son’s asthma worse when he was small. I will pray it gets better with age. I tell my children all the time now that they are grown that I earned this grey hair and all of these wrinkles.
Every time I see his happy little face it is hard to remember his serious health issues. He makes them look like no big deal. Lucky Gannon has a great Mom to advocate for him and pay attention to every nonverbal detail of his daily life.
Hugs to you all. Wishing you a great family weekend!