Tuesday, 14 February 2017

Praise for the G-tube and Other News from the Front Lines

So life has been moving along...

1. I finished installing hardwood floors and we have now moved upstairs to the main floor of our new house.  I'm pretty happy with the results considering I've never done flooring before.  Extra Brag Rights - These floors were unfinished and thin (2 1/2 inch)- meaning I had to install, drum sand and seal the flooring!  (+10 Bonus points for installing the new dishwasher.)  My DIY skills have just leveled up!

2.  Gideon has been doing fairly well over the last 6 months.  Yes we have had vomiting.  Actually lots of vomiting.  Vomiting that has sprayed walls and stained carpets.  Vomiting that has brought us to tears. Vomiting that has.... uh... you get the picture.  BUT- even though we have had these intermittent episodes, we have avoided hospital admissions.  Why? Because we have been able to keep him hydrated through his G-Tube.  That and his puffers have really been helping to keep his O2 levels up.

The g-tube thing though, really is the hero.
All that medication we had to give orally that made Gideon gag and/or vomit? *POOF*- G-Tube magic makes it vanish before your eyes- straight to his gut!  What's this?  Gideon has decided he's not wanting to finish his bottle and mommy's under pressure to get his intake up? *POW*  G-tube to the rescue!  Dehydration knocking on the door?  *REJECTION* Our G-tube doesn't welcome solicitation!

Alright... so maybe not ALL our problems have been solved, but we've avoided hospitalization and that is a huge blessing.  

3.  Gideon is bum scooting like crazy and we have started trialing a new walker called the "Mini Pacer".  Looks like with the accessories we need, it might be around $1500 before the Assertive Devices Program- which should cover about 75% of it.  So far this walker has received mixed reviews from him.

4. Gideon has not really been gaining the weight or muscle mass we would have hope for.  Most little ones who are given a g-tube will see a lot of catch-up weight put on after it.  Gideon has been really really struggling in this area.  He seems to catch a lot of bugs and now he's burning more calories with all the bum scooting, but his stomach only seems to hold so much.   We haven't really been able to increase his intake without him vomiting.

5. There have been many gains- mostly due to Gideon not being admitted to the hospital monthly but also due to his eyesight improving marginally.  He now wears bifocals and is identifying pictures in books.  He has been learning his shapes, colours and animals.  His favourite thing to do, after tickling people, is to draw... on everything.  Washable crayons- you are my friends! He enjoys tactile books and has even been placing his fingers on the braille.  Who knows?  Maybe one day he will read.  

6. Language Skills - Gideon has been slow to make progress in this area.  I wonder if there are any studies that suggest feeding delays/oral sensory aversions can effect vocalizations?  The tongue is a muscle and I'm sure it is strengthened by oral feedings that might influence dexterity, right?  Or maybe there is a coordination issue happening?  Anyway, Gideon has been vocalizing "Hi", "Momomom" "Dadda" and "Aaaaa"(for Alex).  When I ask what a cow says, he reply's- "AaMmmm"  I've also heard "Kitty" when we've talked about a cat.  I also think he's trying to say tickle- "tatatata".  He has also attempted to sing Old McDonald- "Aaa Eee Aaa Eee O".  His sign language has been trucking a long too.  He has attempted to combine two signs "Ball please" when we are playing ball and  he will bum scoot to me , lift his arms up and sign milk -"Up milk" .  I've also seen the "more" sign combined with different things.  Steady onward little snail, steady onward.

So that's about it, other than some routine tests- an MRI of the head tomorrow under sedation, some lab work and a spinal xray- to check for the off chance of scoliosis.

Steady onward.          

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