Hello!

I can’t believe that it has been so long since I last posted. I actually had made it a goal to post twice a month, but the last month has been a bit crazy. Rob and I found a house in Pine Bluffs and an offer was made. We are now busily working on packing [...]

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Relaxation

It’s been a long week between colds, ear infections and Simon back on oxygen.  As our long weekend has progressed, today has become a day devoted to good food and much relaxation. I put Simon to bed last night on his Tucker Sling.  He’s been sleeping on his back to help with some of the [...]

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I must confess…

I never thought we’d see this day for a long time to come. It started last night.  I put Simon to bed and as he began to drift off to sleep, I put on his pulse oximeter.  On 1/8 L, he had an oxygen saturation of 97%.  I dropped him down to 1/16 L and [...]

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Simon’s Birthday!

A Long First Year Pregnancy is a joyous time for most families.  Excitement builds as the weeks pass until that amazing moment when a bundle of joy takes their first breath and begins learning the world around.  For some parents a premature birth changes excitement to fear, angst and sorrow.  Those parents face many months [...]

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Our Week

Last week, Simon had a bit of a runny nose.  By all other accounts, he was doing relatively well and seemed quite healthy.  Tuesday night, we went to Nana and Papa’s house and after we got home, something just wasn’t right.  Simon’s oxygen requirements went up considerably.  I made the call to the pediatricians office [...]

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Up and Down, repeat often

That would be our world. One moment is filled with much gleam and the next brings disappointment. I most recently discussed Simon’s success with spoon feeding. The joys were short-lived. Simon has had another ear infection. This is his third in six months. One more in the next couple of months means tubes. We’ll see [...]

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Following Simon’s Cues…

As part of our therapy, we have always followed Simon’s cues.  We watch for signs of tiredness, weakness, unhappiness, joy, etc.  Tonight was no different in our time together. I’ve been putting Simon in his high chair when we eat at the table.  I’ve offered plenty of toys for him to play with and have [...]

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Friday’s Visit with Doc

We were fortunate to see Doc on Friday. We actually had a follow-up to Simon’s ear infection, but took the opportunity to go over some progresses we’ve had with Simon and his feeding difficulties. Doc was quite impressed and even witnessed Simon eating while there. After assessing his weight, the number of days, Simon’s activity [...]

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Spring and Summer

Wyoming springs and summer bring the opportunity to change up a few things in our routines and begin spending more time outside.  We’ve still managed to keep Simon in quite a bit, but have enjoyed a few more walks and quiet evenings enjoying the sunsets. This season is bringing a few additional changes to our [...]

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Bionix Controlled-Flow Baby Feeder Day 1

As with Simon’s feeding challenges, we’ve settled into a routine of thickening his feedings.  That began prior to discharge home and has changed, but continued since. To recap: Simon spent 14 weeks with a feeding tube of some sort.  He’s had Nasojejunal, Nasogastric and Oral-gastric feeding tubes.  When he began nippling, all went well to [...]

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