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Wednesday 24 January 2018

Letter to Myself for 2018

Dear Me,

Get ready to dance!

This is the year you will dance round the house. Holding it together with soft padded steps, while keeping up with the stomping of your 5 year old and the tumbling's of your weakened youngest. Try your best to side step with gentleness and patience, during the tantrums and melt downs. You've got this!

Tip toe lightly around the many puddles of puke and don't crack under pressure when the dietitian pressures you to keep your son's weight up. Try to leave your anxiety backstage as you struggle with his G-tube and the inevitable pneumonias. There will be hospital admissions, but remember you have a backup dancer who is amazing! Let him take front stage once in a while. 

Monkey wrenches will be thrown your way but you are light on your feet. Some you will avoid, others will hit you. Just remember that there is a choreographer, who knows the routine and will teach you the steps. Please take the time to learn the steps.

Slow dance in the kitchen with your husband. Hold each other and whisper "It's all going to be OK". Try to believe it.

Watch your 5 year old break dance and twirl round the room. Join in once in a while. Find joy in these simple moments that won't last forever. Remember that one day he might not want to dance with you, so do it while you can. 

Keep hope and find encouragement in the slow steady rhythm your special one dances to. His dance is hard. So unfairly hard. Feel confident in your role. You are doing the best you can. 

So remember to dance. Dance through the joy, the sorrow, the pain. One step at a time. 

Love, Joy and Blessings,

Me

Tuesday 23 January 2018

Same old... with a little new.

Let's see...

Life has been pretty consistent around here.  Gideon has had multiple cases of pneumonia since our last post.  Only one required hospitalisation- for about 2 weeks in September?  The rest we managed to deal with in house.  This week he has an ear infection and is on antibiotics again.  So sleep has been a precious commodity.   

We have been using the feeding pump more.  We have had less vomiting when the feeds are slower and he seems to tolerate larger amounts.  We are still trying to introduce solids but the battle with oral sensitivity rages on.  We have started paying for a private OT who is regarded as a sensory guru in our area and are hoping to make some progress this year.

On the positive side on things, for the first time since before he had teeth, he brought food (a tortilla chip counts as food right?) up to his mouth and nibbled.  Sure he spat it out all over the place and kept wiping his mouth/tongue with his hand but I consider this a milestone in his sensory journey.

Later this week we will be meeting with the school in regards to Gideon starting kindergarten in the fall.  We are not sure if we are going to hold him back a year.   There are so many things to consider and it feels rather over whelming.   All the accommodations that need to be made make my head spin.

Look out 2018... Here we come, one day at a time.