A month ago we found out Colin's G6PD (glucose 6 Phosphade Dehydragenase) was very high coming in at 6 and it should be around 2. The Doctor's believe this was a result in the increase of Dapsone (anti pneumonia) so we was taken off it immediately. That Friday 7/20 he started Bactrum which is another anti pneumonia med that he will take on Friday, Saturday and Sunday's twice a day. We used our typical approach which is crushing the pill and diluting but because of the awful taste we struggled for an hour and a half the first weekend. Since then we've had much luck taking the medicine with a Popsicle to mask the taste. It doesn't matter that we missed a dentist appointment, camp, karate or that we have a Popsicle at 8am all that matters is that he took the medicine.
This past week Colin had his routine blood check and his counts are good (ANC 1800) and hemoglobin remains good. Due to a growth spurt Colin's steroid was increased from 1.75mg to 2.25 mg. and boy are we feeling it. In just one day the menu consisted of: pancake, banana, 2 bowls of animal crackers, 1 sleeve of graham crackers, 4 chicken nuggets, peanut butter and jelly sandwich, gold fish, endless cheese sticks and american cheese, one jug of apple juice, half a jug of orange juice, spegettios (with hidden veggies), another peanut butter and jelly sandwich ... should I go on? This increase in the steroid is no joke and is a full time job tending to the demands.
Due to a series of events we've encountered over the past couple of months we'd like to remind our cancer family friends that you are the best advocate for your child and always remember to take notes on all the medicines, increases/decreases and so on, reiterate meds and doses at all visits but most importantly listen to your gut.
In the middle of all this we celebrated Maddie's 3rd birthday by going out to dinner and having family over for a little party. She was so excited and dramatic about every aspect .. it was so cute and so different from Colin's reactions. Maddie had to try on all her new clothes immediately after opening. She wore her tutu out to dinner and wanted to dance when she heard the bathroom music (reminding us of Nanny). She insisted that everyone sing to her in the restaurant. She is no longer a baby ... she gave up her one bottle per day (bedtime) by finding a special place for it at the camp ground. She now has a big girl bed and is very proud of it! She will always be our baby and has had to grow up so fast but we couldn't be prouder.
We are enjoying the summer and will continue too!! Here are some overdue pictures:
1 comment:
The kids are so beautiful the photos are as well. We think of you often and send you good energy.
Tanya and Wade
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