A day in the life of Cole.

A day in the life of Cole has lots of good and lots of opportunities to grow. He is such an amazing little guy. His body is so little, but his spirit is so huge!

I have wanted to write this post for a year, but it seems more like little details that I just want to keep track of. It's not necessarily fun and entertaining reading. But since I want to use this blog as my journal, here goes.

He is always a great sport about wearing his backpack. It weighs 10 pounds. He weighs 24 pounds. It's almost half his body weight. And yet he never complains. The first time we put it on him, it flipped him on his back like a overturned turtle. He looked up at me with sad eyes that clearly said, "Why did you do that to me mom?" I started sobbing. It was horrible. It reminded me of that youth speaker John Bytheway's talk about having unrepented of sins in your backpack, like bricks weighing you down. But I knew that Cole couldn't just go repent and take of his backpack. Instead, he was just going to wear it for the first 5 or 10 years of his life. No... we have no idea how long... but it will be a while.

Two of his weekly therapies are vital stimulation. They are the electrodes that are taped to his throat in the pictures above. It is basically electric shock therapy for an hour twice a week. He hates it. It is really painful. That is where I finally called my mom and told her I needed help. I couldn't stand to do it all. So she has been wonderful and she takes him once a week, and I take him once a week. It all got really overwhelming for a while. Spring was hard. Summer was much better. Fall is going great. Every month it seems like our lives get better and easier. I think we just learn to deal with whatever we need to, and by making the best of it, we end up enjoys it so much more. Life really is what you make it. Yeah... tough, hard, horrible stuff happens. Now make it better, and have a great life anyway.

Cole's Schedule:
Monday
8:45 - 9:45am CHOC Hospital for Vital Stim and eating therapy with Melissa (Grammy takes him to this one!)
10:00 - 11:00 CHOC Speech (Beginning next week.)
11:00 - 12:00 Rainbow Kids Acheivement Center with Cami for Physical Therapy
12:30 - 1:00 Hang out with Mom while Brighton is at Talk Therapy
1:30 - 2:30 Speech Rainbow Kids Acheivement Center with Kelly

Tuesday 12:00 - 1:00 OT Charlotte Pacific Pediatric

Wednesday 8:00am - 9:00 OT (Breathing and Vocal) Charlotte Pacific Pediatric

Thursday
9:00 - 10:00 CHOC Hospital for Vital Stim and Eating with Jamie
10:00 - 11:00 CHOC Speech (beginning next week.)

Thursday afternoons are spent at different specialists. Every month Cole sees these five specialists: I try to get them all on Thursdays, but sometimes it does not work out.

GI - Failure to Thrive. G-tube.

Pulmonary clinic - Chronic Lung Disease. This is the major cause of almost every problem Cole has today. In one way or another... it is directly related to almost everything wrong with Cole. Seriously, take care of your lungs. Don't smoke. Exercise.

ENT - Paralyzed left vocal chord, right chord severely damaged. This causes Cole to #1, not be able to talk, but #2, whenever he drinks, his vocal chords can't close off completely, so he chokes as water or fluids go into his lungs. This is causing him to get sick a lot. Often with pneumonia, which is what we have been to the hospital for 3 times last year.

Dermatology - Severe skin problems caused by chronic lung disease. Cole is "allergic" to water. We are only supposed to bath him once a week. That makes for a very dirty 2 year old! Last winter his skin was horrible. He had scabs everywhere, even in his hair! But we have learned how to control it much better.

RSV clinic - 2 horribly painful shots in his legs every month. But they keep him alive. However, because the nurses who give the shots always wear gloves... he is now terrified of anyone wearing latex gloves. We were at the mall, and a lady was cleaning the carpet, and he FREAKED OUT! He start throwing such a fit that he threw up all over! It is so sad. But seriously, he is terrified of rubber gloves. If I even say the word while we are in the doctor's office, he will throw up, so I have to spell it to them and ask them not to wear them. Luckily, so far, everyone has been great about not wearing them with him.

He also sees the eye doctor every 6 months, and goes to the EDAC (Early Developmental Assessment Clinic) every six months.

His area of our room is like his own little hospital room. We are thrilled to have gotten rid of the oxygen tanks and the iv pole. They took up so much space! All of his supplies are in the clear drawers you see in the picture below. It all fits perfectly.

Here is Cole's daily medicine schedule.

AM
Formula	Each morning we make a fresh bag for the Zvex Pump.
	2 cans Peptimen Jr
	Continuous 24 hour feed at 40 cc's per hour.
Tube	Erythrom Eth 200/5	.5 ml	GI Younes/Robinson
	Ranitidine 75 mg/5m	1.5 ml	GI Younes/Robinson
	Prevacid Solutab 15mg	1 tablet	GI Younes/Robinson
	Dissolve with water in small cup and put through g-tube.
Inhaler	Qvar 80mcg	2 puffs	Pulminary CHOC
	2 puffs, 6 breaths each, together is fine
Skin	Pro Topic .1%	cover area	Dermatology Baugh
	Protopic Not on Weekends!
	Betameth Dip .5%	cover area	Dermatology Baugh
	Weekends Only
Inhaler	ProAir HFA	2 puffs	Pulminary CHOC
	Only if needed. 2 puffs, 6 breaths each, 1 minute a part.
noon
Tube	Erythrom Eth 200/5	.5 ml	GI Younes/Robinson
Skin	Mimyx cream	cover area	Dermatology Baugh
	Only if needed.
PM
Tube	Erythrom Eth 200/5	.5 ml	GI Younes/Robinson
	Ranitidine 75 mg/5m	1.5 ml	GI Younes/Robinson
	Hydroxyz Hcl 10mg/	1/2 t.	Dermatology Baugh
	Cyproheptad 2mg/5ml	1 t.	GI Younes/Robinson
	Cyproheptad Not on Weekends!
	Singulair 4 mg	1 packet	Pulminary CHOC
	Mix with 1 tblsp. Peptamin jr and put through g-tube.
Skin	Pro Topic .1%	cover area	Dermatology Baugh
	Protopic Not on Weekends!
	Betameth Dip .5%	cover area	Dermatology Baugh
	Weekends Only
Formula	Before bed add 2 cans Peptimen Jr to the bag for the Zvex Pump.
	Continuous 24 hour feed at 40 cc's per hour.

Cole is an amazing miracle in our family's life. He has brought the spirit into our home with such a beautiful strength. Every day of my life is better because Cole is a part of it. It is an honor and a joy to be him mom. I have learned more about having my priorities in place over the past 3 years then I ever dreamed possible.