Colt is 15 months old, 19 lbs 15 oz and 30.55 inches long. He is underweight right now while we continue working with nutrition very closely to keep him in ketosis and improve weight gain. She helps us find the right recipe for him, which means daily milk prep, glucose checks and ketone checks. Yesterdays weight was a big step in the right direction. Keeping Colton in ketosis is what has been difficult especially with the frequent illnesses he has had. You can tell when he is out of it. 

Being in ketosis has improved his seizure threshold better than we ever imagined. It’s woken him up. The ketogenic diet has changed his life. He is so much more vocal, so many tones and he seems to love his voice. He mimics and engages back and forth. He has been more expressive too. Things he has never done before. 

After 4 admissions to PICU from October to December..yep, we went back after rhino and the day after Christmas too. 

1st was respiratory distress, unknown organism

2nd rhinoentero virus

3rd 2.5 days after discharge with rhino virus we were life flighted to providence for RSV

4th respiratory distress, unknown organism

Colt has been to the ER after a really scary fall, one more admission at Mat Su Regional in January, and another visit to the ER late January for autonomic events. 

We got a donated wheelchair/stroller for Colt. It still needs to be fit to him a bit better, but gets him to sit upright and able to engage with his environment. Something we really want and need for him. When heading home after showing it off to family, the seat of the wheelchair slid off the base and dove into the concrete garage 😭 luckily the head rest took the majority of the hit, but he earned himself a trip to the ER for a CT scan. Luckily he is okay and only had a egg on his head for a day or so. When you have a child with a brain injury already.. this was insult to injury for me. Even for Colt.. boys will be boys. 

January, 2 days shy of no admissions we were brought to Mat Su regional via EMS. Colt needed his bipap to sustain his airway, but the machine was breathing for him, not working with him. We spent five days over there and got a lot of work ups done. 

Even though Colt has had many respiratory illnesses, we haven’t had one since November! Better yet he hasn’t had one confirmed case of pneumonia since NICU! That’s a huge win when you have a kiddo who can’t swallow/can’t swallow enough, and has mucous and secretions galore. He is on secretion medications, getting Botox injections and now has a chest vest for percussions to move the junk. He has learned how to do mini projectile coughs haha. 

We started DMI therapy in January, dynamic movement intervention, and Colt is killing it. Little successes every session. He continues with speech therapy for e-stimulation and is making progress there too. The e stim machine is helping his to engage in swallows. And yesterday he leveled up with a new set of reps and more swallows were initiated. It was amazing to see and daddy got to see it too. This boy knows his speech therapist as the lady with popsicles haha

Currently, Colt is in the mist of a GI work up because he has had very watery stools since October. This is concerning because of risk for dehydration, electrolyte imbalance, wt loss and more. With the ketogenic diet, usually patients get constipated…. Too much to ask for Colt to follow the norm lol. 

We are also working up autonomic dysfunction with neuro. He is having episodes that effect his vitals, presentation, and mental state. Trying to still pinpoint the exact triggers for these events. They’re very scary. He turns grey and his heart rate drops. Luckily his neurologist knows exactly what to do and how to support him. She has been an incredible resource for us. 

Medicaid won’t let me be his paid nurse. Most logical thing to do with how many appointments and therapies he has, monitoring, lack of sleep, lack of staffing, and because he is ET and I am Elliot. I know when something is going to happen before anyone and 98% correct. but I have to remember logic isn’t how the world works most of the time. Have to wait until he is 3 years old to have in home supports and maybe then I can make a small income caring for him and supporting his development. 

In the meantime I am trying to get my nursing hours as much as I can to keep my license. It’s incredibly difficult when I can’t leave Colt for more than 6 hours. Even 6 hrs is pushing it. I do home visits for an agency on the weekends when Chris is home to supplement income and get hours, but unfortunately it won’t be enough. I’ll have to work a night job when we finally get a night shift nurse at home or I’ll be applying for a scholarship to take the Refresher course for my license renewal. The hits keep coming, but I have to remember this is all temporary and im still doing the damn thing on top of everything else. 

I am probably missing a lot. It has been nonstop since our last update. But the bottom line is Colton is home now and healthy. We are officially 1 month with no admissions!!!! *knock on wood* works up are in progress. Seattle children’s is coming. And.. we still feel 2024 will be Colton’s year.