In Arizona it’s hard to
believe Fall has started. Temperatures still top the high 90’s, and sometimes
100’s. Fortunately, the evenings and mornings are cooler. Aidyn has done very
well keeping hydrated during the summer. I think what has been helpful is that
I have weaned Aidyn off the antibiotics for bacterial overgrowth. It always gave
him runny/watery stools the first half of the week long antibiotic cycle. This
is how I weaned him: In June, I started to space out the antibiotics by adding a
week to the time Aidyn had off of Flagyl (initially only one week). By August
he was able to go three weeks off the Flagyl. He’s currently on his fourth week
off.
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| First ice cream! |
Two weeks ago I started adding ¼ teaspoon of baking soda to every 20
oz of water Aidyn drinks. Any extra gas build up he usually got seemed to
disappear. Aidyn now consistently has soft-formed stools. They are smelly, but without tons of gas and liquid. I find
if I give a drop of oil of oregano for a couple days, it will kill the bacteria
that the probiotics missed and the smell will lessen.
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| Big Boy bed!! |
Aidyn received his
first dose of B12 shots the beginning of September. He will continue to get
them, with labs done every three months. His weight was checked and I was surprised
Aidyn didn't gain weight. He has been hanging around 26 ½ lbs since the
beginning of summer. I am hoping Aidyn will have gained some weight by Friday, the next GI appointment.
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| Much needed haircut done by Mama. |
I have some exciting news!
Aidyn has started Preschool! He goes half a day, four days a week. It has been
over six weeks and it is going smoothly. He did catch a cold three weeks into
school, but he recovered quickly. His speech has improved and it is probably
the combination of Speech Therapy at school, his peers and just plain time. So
far there have been no potty accidents at school. He has good control of his
bowels and is pretty regular. Despite that, potty training is very slow. He just doesn't want to take the time to go to the bathroom. I am hoping
by the time he is four he will be potty trained AND off the bottle. Drinking Elecare
formula out of anything else just won’t do. I shouldn't complain because at
least he will still drink it and he has no feeding tubes.
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| Ready for school. |
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| Finger paint! |
Recap on Aidyn: He has
only 5 – 10% of his small intestines left, no ileocecal valve, no appendix and
50 – 75% of large intestines left as a result of NEC. He has been off TPN/Omegaven( IV nutrition)
for 21 months and drinks Elecare for half his calories. He eats what he can
tolerate which is most meats, gluten-free starches and is limited to carrots,
apples, tomatoes, and strawberries for fruits/veggies. He is allergic to wheat,
cow’s milk, beef and bananas. Each day he drinks about 24 oz of Elecare at 36
cal/oz and another 20 – 24 oz of water with electrolytes and sodium bicarbonate. Along with liquid
vitamins, he takes 16000 units of Vitamin D3, 2800 mg of fish oil (when I remember), almost half a
sachet of VSL#3, and Ursodiol every day. I give oil of oregano as needed. He
recently weaned off Flagyl. He has 2 -3 bowel movements a day, soft formed.
That’s it!
I always pray for
the miracle that he wakes up one day
with everything intact inside. That’s the kind of faith I have and it has
gotten me through it all.
