Monday, December 19, 2016

Blur of a week

This last week has been a complete blur. Whenever Sonzee has an intensive week of therapy the intensity isn't just during the sessions.  She has two sessions a day for five days and they are 45 minutes each, with two hours inbetween the first and second.  The sessions themselves take place in a home that is about 32 miles from our home.  We are lucky to have close friends near the area so I usually pop over inbetween and she is gracious enough to host Sonzee's older sister for a play date with her son on Tuesdays each time.  With the rest of the usual weekly insanity of kids schedules and Sonzee's appointments my ability to have a fully functioning brain at the end of the day is a tall order.  Therefore writing blog posts during those weeks are extremely challenging.  It takes me time to recoupe from intensive weeks, so much so that I can't even figure out what my thoughts are this week.  

There is so much going on with Sonzee that I am tackling each thing individually as if her life is a checklist.  This week she has multiple X-rays to check on a colon marker study that will determine the amount of time it takes for her body to process food.  She consumed 24 little round markers this morning and we will check on Wednesday to see if there are 6 or more remaining. Of course she has been screaming the majority of the time since she has eaten them and she has spit up twice.  I didn't see any markers come out though, so hopefully they stay in.  It has been four hours, I am holding my breath as this is the time in the past that her stomach decides to rid itself of its contents.  It was only an ounce at most of sweet potatoes, so I am crossing my fingers.

We have another two weeks or so for us to decide what we are going to do with switching her NJ tube (nose to intestine) to a GJ tube (stomach and intestine tube).  The pro of switching are that there will be no tube on her face and she already has the G portion, so adding in the J "shouldn't be difficult". The cons list is a bit longer.  Her current NJ tube is an 8French, which means it is very small.  The GJ tube size will be 14French at the smallest size.  With this size the opening between her stomach and intestines (pylorus) will be close to twice the size it currently is opened, which means there is a higher chance of her intestinal feeds backing up into her stomach and causing her to be in pain or to continuously vomit.  We won't know until we try, but once we do, there really is no going back.

In addition to the "typical" cdkl5 dealings we are leaving for Florida for a week and so I am trying to make sure all gifts and supplies are packed and actually remembered.  I am even packing in advance (whoah I know!).  Luckily Florida is still in the US so even if I happen to forget something we should be able to get it relatively easily.  "Lastly", I am also starting to sort through my emotions on little bear turning two in less than 2 months...but I think I am just going to put that on hold for a bit and focus on the next couple of days because my brain is only capable of so much.

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