It’s hard, when you have one very particular goal in mind, to not get bogged down in the fact you haven’t been able to make it happen.
It’s easy to forget how far you’ve come. What you’ve accomplished. Ignore what you do have. (And what you don’t.)
And so, in the interest of cheering myself along, I’m going to make a list of all the things Ive done for Adahlia — the conditions that are typically associated with DBA that she doesn’t have, problems solved, problems avoided, etc.
Because really, it could be so much worse.
Problems Solved, Resolving, or Avoided:
1) Brain inflammation & tics (solved)
2) ADHD/ADD/Hyperactivity/Dyslexia/other learning disabilities (solved and avoided)
3) Violent “over-reaction” when upset & irritability (solved; what remains is normal or appropriate)
4) Frequent gut / belly pain (solved)
5) Difficulty swallowing & frequent hiccups (solved)
6) Frequent painful mouth sores / Canker sores (solved)
7) Low white blood cell count / neutropenia (solved)
8) Complete lack of own red blood cells (resolving… usually has at least some level of her own RBCs these days)
9) Elevated liver enzymes (solved, sometimes slightly elevated)
10) High (dangerous) levels of cardiac iron overload (now non-existent)
11) At-rest signs of neurological stress (sleeping with fingers rigidly flexed)
12) Moderate-high levels of hepatic iron overload (now low)
13) Diarrhea (solved)
14) Leukorrhea (solved)
15) Loss of vision and hearing (prevented through proper supportive therapies for chelation)
16) Need to do nightly needle-pokes for desferal IV chelation & sleeping hooked up to a pump every night (avoided through proper chelation)
17) Extremely short stature (avoided through proper iron chelation and refusal of long-term steroids as an acceptable treatment option)
18) Precocious puberty (I can’t imagine the idea of her entering puberty in 6 months, at only age 6!, avoided through refusal of long-term steroids)
19) Osteoporosis at a young age (Again, I can’t imagine her having osteoporosis at age 8, or in 2 years, avoided through refusal of long-term steroids)
20) Diabetes (avoidance of long-term steroids and proper iron chelation)
21) Adrenal fatigue / insufficiency / failure (avoidance of steroids)
22) Inability to breathe deeply without discomfort (resolving; just started working on this)
23) Fear of strangers / distrust of others / dislike of being touched (mostly resolved as we went along due to lots of positive touch, EFT, Shonishin, moxa, honest conversations, acceptance, and trauma release work)
24) Frequent colds / upper respiratory issues (solved)
25) Frequent leg pain of unidentifiable origin (solved)
26) Lack of appetitie (resolved; will now eat heartily right up to and on the day of transfusion)
27) Immediate exhaustion during or after eating (solved)
28) Transfusion reaction (requiring Tylenol, Benadryl, etc due to reaction to the transfused blood; avoided to date)
29) Antibodies against donor blood (avoided to date)
30) Heart defect (resolved) and damage to heart from iron overload (avoided)
… and maybe there’s more.
Mama’s done good work.
I can do this.
Let’s get to work!
Here we go.