June 17th 2016…

It’s been about 8 months since I last updated this and a lot has changed around here since then. Mainly, there’s this guy…

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He’s Fletcher ๐Ÿ™‚ he still doesn’t have a middle name…we kinda forgot to finish naming him after leaving the hospital.

He’s 8 weeks old and giving us lots of wonderful smiles.

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I haven’t taken as many pictures of the three boys together as I’d like but we have a few good ones. I always want to take photos of the boys when Foster’s having a good day and smiling a lot. Unfortunately, there hasn’t been as many of those days lately. His illness has always affected him in ebbs and flows but since the fall when Foster had his ICU stay we’ve seen an increase in the frequency of rough patches. 2016 so far has had quite a few rough patches which take him a week or two to recover from before we see our smiling happy Foster again. And then it seems like he’s happy for a few days before the next rough patch hits him. He’s overall been stable but has been back on 24 hour oxygen more often then not and is struggling with increased seizures and a few other irritants for him. His G.I. system has been slowing down since the fall and we’re at a point now where he regularly does not meet his calorie goals because he can’t tolerate his meals even on a continuous feed. Which is us setting the feeding pump to take his total daily blended diet volume and run it over 24 hours, so the pump administers roughly 50ml over an hour, 0.8ml/minute. Even at that very small amount he’ll still vomit out a significant amount to the point that we have to turn off his pump all together for periods of time, dilute his formula or even run just water and test his blood glucose to ensure his blood sugar doesn’t drop too much. He previously had a surgical procedure called a fundoplication done to prevent this frequent vomiting. the procedure was done because Foster is unable to protect his airway so when fluid enters his mouth, he allows it into his lungs. That seemed to help for a while but now he’s actually gagging enough that he can push it through the fundoplication and up into his mouth. So we’re always rushing to remove his feeding tube and vent his tummy when he gags before anything gets up into his mouth. Which is a bit of a pain if we’re driving or unable to access his mic-key site easily and quickly. On a good note, the bone infusions he’s been receiving seem to be helping since he hasn’t experienced a fracture since January!

My favourite picture of Foster so far this year…

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Having a healthy baby is surreal. Honestly I can’t even explain the freedom of something as simple as picking up the baby and walking out the door without cords and tubes limiting your distance. At the same time, I haven’t quite fully accepted that Fletcher is healthy yet. I know that he is, but I still examine him looking for/waiting for a seizure.

Clayton is so thrilled with our new addition. He literally hugs and kisses both of his brothers all day long. He’s also the only one that doesn’t seem to confuse their names ๐Ÿ™‚ Something that didn’t cross my mind when we named Fletcher….but I constantly call Fletcher Foster and Foster Fletcher… oh well, people generally know who I’m actually talking about I think.

 

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Our home has also changed since my last update. We moved at the start of December into our new home which has lately kept Brett very busy with projects. He’s just recently finished our fence and is currently out front digging a hole to plant our front tree. Tomorrow and Sunday we’re laying our sod and then hopefully a break for a bit would be good.

That’s it for now because I’m HORRIBLE at ordering all of Fosters home care supplies on time each month and am always running out of feeding bags (luckily I have a couple other medical mama friends that have loaned me things when needed! You can’t get this stuff at the pharmacy..) Anyway I have one feeding bag left and an order waiting to be picked up so I’ve gotta get myself up to the children’s hospital before they lock those doors for the weekend ๐Ÿ™‚

 

 

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