Just waiting, like always

I'm not used to the waiting, but, I'm almost resigned to it. I'm too emotionally drained to fight against the waiting anymore. I haven't had the strength even to update on here. It's still very confusing. And sad.

A week ago, we saw the geneticist. She said the following things:

• There is some underlying problem in Boeboe, causing all her issues - faulty genes, chromosomal defects, a known syndrome, etc.
• Nothing of Boeboe's symptoms or signs stands out clearly as to what the cause is, so we're going to have to search for it.
• Boeboe has some facial and other features pointing to a chromosomal disorder, but it's all non-specific. She has a unibrow, low hairline at the neck, small hands and thin, long fingers, hooded eyes, flat nasal bridge, flat forehead, head circumference on the 3rd percentile, etc. Some of these might just be genetics - meaning, she could've inherited it from me or her dad's side, like her small lower jaw.
• The geneticist doesn't believe it is velo-cardio-facial-syndrome, mostly because Boeboe's facial features aren't specific enough for that disorder. Personally, from what I've researched so far, 22q11 duplication struck a cord with me. VCFS is a deletion on chromosome 22, at the q11 area. The duplication seems to be very similar to VCFS, with overlapping features and signs, but it also seems just that tiny bit milder in some areas. For example, 80% of children with the deletion has a congenital heart defect, while only 20% of the children with the duplication has heart defects. Same goes for cleft palate, etc.
• The geneticist believes our best option would be to do some kind of micro array analysis. It gives an overview of all the chromosomes. Unfortunately, it only detects about 15% of the problems. Still, it's a good start. The one available in SA only detects about 7%, so she'd like to send Boeboe's blood to England to do this test. Otherwise, we can wait, because they're busy to implement the better one in SA, but it will only be available in about 8+ months time.
• She's going to talk to the professor in Weskoppies, and get back to us on a plan of action.

So as you can see, we're back to waiting. In the meantime, I've been discussing some things with her psychologist, that's worryingly. It has really dishearten me. It's one of the reasons I have no strength left. Maybe, one day, I'll go into more detail on this. For now, it just means that I see why the two psychiatrists said that my daughter has a host of psychiatric problems. It's so sad, so scary and just awful. It's too much for any parent to handle. So for now, I'm kinda ignoring it. After the exams, we have another psychiatric appointment, so I'll face it then again. Her anti-anxiety meds has been stopped after using it for 2 days, because of an allergic rash. And by the time that healed, it was too close to the exams to start a new course of another type. So we'll get a script for that at the appointment as well. Pity that we weren't able to get her some help for this exam already. It would've helped.

We've been studying for more than a week already. It's really, really hard work. I feel so sorry for my children. I'm a slave driver though. Especially because this is make or break for Boeboe. A couple of the specialists, well, actually all except the psychologist, told us to take Boeboe out of mainstream. But we've decided to give her and the school a chance. If she fails this exam, we'll make some decisions. If she passes, we're giving her another year in the school. So, this is make or break. My nerves are frayed already, and we're just busy with revision. I'm summarising all her work for her. It takes me about 5+ hours per subject, and she has 6! So you can imagine how shattered I am. I can't wait for the exams to be finished. At the same time, I'm terrified. How awful that I'm more worried about my 10-year old's school exam, than I was with my own B.Sc final exams. :-( So so wrong. But that's life.

So a quick update on Monkeyman. With him, we're ALSO just waiting. This one is harder on me. I accept that chromosomal studies and things like that takes time. But to sit and wait to see if your son's heart heals itself or not... for the 2nd time in one year? It's indescribably difficult. Our GP says that a function of 36% is really, really low. And that he doesn't know the reversibility of cardiomyopathy in children. Implying that it's not good news in adults. So I'm not sure what's the chances of Monkeyman recovering from this one. It scares me. Alot. I think that's why I focuses on Boeboe's issues. Because even though it's extremely difficult, at least it doesn't feel to me like my child's on death's doorstep, like I do with Monkeyman. Logically, realistically, I know he's not. His left heart isn't enlarged yet, and his right heart has shrunk back to normal size. So, I do believe he has time. If only the heart function wasn't this low, I could've worried less. Couple that knowledge with seeing him being tired on a daily basis. Hearing him being out of breath, sounding tired or complaining about being tired, as well as hearing other people like his teacher complains that on some days he's just not himself at school, or that he's extremely pale, etc. So I'm really worried. It's almost a month since we saw the cardiologist. She said we need to wait 2 months, and then bring him back. Except if his tiredness improves, then we should wait 3 months. Well, after the first month's gone, I'd say he's worse, not better. Not much worse, but definitely no improvement.

So, now we just wait. Wait for the exams to finish. Wait for Monkeyman's tiredness and heart to improve, or for the appointment on the 4th of December, whichever comes first. And waiting for the geneticist to decide what tests our daughter needs to determine what chromosomal problem she might have. Waiting for Boeboe to fail or pass grade 4. Waiting for the psychiatrist appointment to hear what everything means. Waiting for her to be put on some more medication. So like always, just waiting.

Blegh.