Family Stories

We have sorted out his diet issues along with gas issues! In those regards, we are in a great place. Instead, we forge our way with neutropenia. No one can tell me why this is happening nor if it will ever resolve. We sit and wait for the next fever to send us to emerge to be pumped full of antibiotics. Parenting is hard. Every cold and every cough leads me to being on a fever watch - this kid probably thinks I’m a bit crazy. The thermometer is a regular thing for him. Who am I kidding ... thermometers plural would be more accurate for this crazy mom. My god is he adorable and patient with me. We are handling much better but I’m writing cause he has a cold and I’m glued to the baby monitor listening to his breathing ... this kid keeps me on my toes. I wouldn’t have it any other way.

No exciting news. Still waiting until the next surgeon appointment. We have been meeting with pediatrician weekly so he could keep an eye on him but he decided we could go until after his next surgeon appointment cause I “got this” and know what signs to look for to take him in to emerge. He really is a lovely doctor and super helpful but I don’t feel like I have this down! I guess I do but daily changes in his diet, gas, and ability to take meds always have me on edge - let alone bowel issues. I guess I always have the almost three year old’s potty training to keep my mind off things 😒🙄

Beyond grumpy this morning - could have been the 430 am wake up call courtesy of a pint sized dictator. But that tree just makes me smile!

Suction biopsy says no hirschsprungs but you can’t have hirschsprungs ruled out without a full thickness biopsy. Which I would have asked him about had I been speaking to him... instead he wanted an appointment for the end of June and I am to see “how things go”. How are things going? Let’s see I’m pumping my son full of stool softener, acid reflux meds and pear juice. I’m constantly trying to sooth him through those long nights. I’m weighing him regularly, taking his temperature, and hovering like a mad woman. So it’s going just freaking awesome 👏🏼

So in addition to my dvt blood clot I received after delivery and this never ending diagnosis process for him, I have now been diagnosed with mastitis. Since I’m allergic to penicillin and on warfarin I’m on an antibiotic I’ve never heard of. It will apparently cause him to stool more often - I don’t believe it! Who knows maybe it will help...

Someone won’t take his medicine! 😩🤨

We met with surgeon today but met only with further tests. I really like the doctors and people at this hospital! They made me relaxed and that is saying something! We have to wait one more week for biopsy results though... here is to hoping I can keep him pooping!

One good thing about his tummy cramps waking him early is we get some good snuggles in before the girls wake up!

We went days without vomiting and the streak ended today. Why is it always after I shower and put on clean clothes? The kid has timing I’ll give you that. Poor guy had waves of it yet again straight down my top 😳😩 Tuesday here yet?

Trouble beyond a doubt!

Emotional roller coaster to say the least. I have gone from “I got this” to crying more times than I can count today. My babe is in a rough state right now as we wait for surgeon appointment. I managed to get some pear juice in without triggering a vomit session ... nothing like multiple waves of projectile vomit. Stool softeners not doing anything and this Mama is feeling helpless. Full time job keeping him calm and somewhat comfortable ... I know he is still in pain but I can fool myself a bit. Bring on the surgeon appt! Nights are the worst and I know this one will be bad ... here is hoping! Frig he is cute! Mama had her hot bath (which technically I’m not allowed with my blood clots so shhh don’t tell my doctor) and I’m ready to go! Let’s see how this wave of emotions last!

Where we were diagnosed and where the journey starts!