Things here have been steady - nothing critical (thank God) but not much relief, either.
Neuropsych assessment for Bee - 3 weeks and it is finally wrapped up (I think)
Metabolic genetics reassessment - nothing major, but always a reminder of how much she has going on
Heat - it went over 38*C yesterday - Bee can't regulate her body temperature, so, while she can play outside briefly wearing a cooling vest, it still really takes its toll on her. I need to buy new inserts for her cooling vest but can't afford them.
Finances - DH is still out of work. I am doing my best to run a small business out of my home (I make bibs, incontinence pads, SN sized cloth nappies and weighted blankets) but I am spreading myself thin and feeling it. To top it off, my sewing machine packed in last week, so I had to get a new one. Mixed blessing - I am upgrading 
XH is a jerk - he has never paid one red cent for my son's care, and is not even willing to foot the bill for DS to visit him even once a month now. XH's new wife is psycho - literally. She has been claiming to have one potentially fatal illness after another - first (4 or so years ago) she needed a bone marrow transplant because of aplastic anemia, then that went away, then it was "brain cancer" and then "3 types of bone cancer" and she has had "8 months to live" for more than 2 years now. They keep telling DS these things with the admonition that he is not to tell anyone. Of course, he tells me right away, but it bothers me that he knows that his father and stepmother are both pathological liars (a huge portion of why I left him). Because DS is 14 now, the choice to continue a relationship with his father is his. My gut says it won't be for much longer.
School - we are working toward beginning transition to a community school for Bee. Again, I need to see this as a positive, but there is also a lot of uncertainty - and I'll admit, I am not fond of question marks.
But here is the kicker... Bee is having some significant blood clotting issues. She is covered in hundreds of bruises, and honestly looks like she is being tossed around. I know that there is no concern that she is being mistreated (her bloodwork reflects the bruising - her clotting numbers are very elevated but aside from even more of the meds and blood products she is already getting, there isn't much that can be done). Her PT seems to think that she will magically be "fine" if she is in her splints more often, but she is only seeing her at school, where she spends her day in her wheelchair or a task chair. Bee was up on her feet for an hour at her baseball game on Saturday, and she is bruised and blistered from the splints so badly now it looks like we have been using her for target practice. She has bruises on her arms, legs, torso, back, buttocks, she even has a bruise that traces the exact path of her port-a-cath under the skin. The bruises don't hurt her, but to see her like this (and know it is tied directly to her physical deterioration) is doing a number on me.
Sorry for the moaning and complaining - it is just a tough stretch on me. I know it'll pass - it always does, but for now, I just want to hide.
Here are some suggested organisations that offer expert advice on special needs.
SN children
May I whinge for a bit?
BeeMom · 21/05/2013 14:43
Hi Beemom I'm listening 
. That is a whole bunch of stuff to be dealing with. And much of it packs an emotional punch.
I can relate to what you say about how the assessments can be difficult as they focus only on all the problems. You can end up temporarily losing sight of your child. The bruises do sound scary- I think you should show them again to the physio - sounds like she/he needs to rethink their approach
Money problems always make things feel worse. Is dh likely to get another job soon? I'm actually on the look out for a weighted blanket and am no way skilled enough to make one myself. Can I buy one from you? Sounds like you are abroad as nowhere in the uk is anywhere near 38 degrees!
Your xh sounds like a knobber. I'm sure your ds will have little to do with him in future but it must hurt to see someone you love treated so badly. How pathetic and attention seeking they are. I hope you don't hide from your ds their lack of financial support for him so he is in no doubt how little he owes his biological father.
DS knows that his dad won't put a penny forward - I am open with the financial aspect of things, but not in a guilt way. If he really wants to see his dad, I have enough rail points stocked away to get the tickets anyhow.
He also knows his father wouldn't know truth if it slapped him in the face - XH has told me wild stories about how I should expect to be contacted by the RCMP for high level security background checks as he is being "head hunted" for a nuclear commission security position. Insane - he has been in the same dead end security guard job for almost 15 years. Definitely not the "desirable" type for high risk security assignments.
However, I REFUSE to speak ill of my XH to my DS. Simply put - DS is 1/2 XH, and to tell him what I feel about his father's character... well, I might as well tell DS he is 1/2 worthless. I was a pawn between my parents (by 10, my mother refused to speak to my dad, so I had to call him and ask where the child support cheque was). I refuse to do that to my son.
DS is talking about getting a summer job - he is definitely separating himself from his father. If I interfere, the decision - in whichever way it goes - will not be his. It needs to be.
I left a message for the physio this morning - she works at Bee's school. As soon as I speak to her, I will call the paed again and see what she wants to do about the bruising etc. It would be a lot easier if we could get everyone in a room to discuss this, but where the educational "conferences" are a royal tit to get organised and have everyone with an interest attend... unless she is inpatient, getting all the "interested" parties in the same place to discuss Bee is impossible. I end up playing go-between. Just for this specific problem, it'll have her school nurse, paed, PT, OT, orthotist, ortho and the geneticist weighing in before it is all done - because it is cue to further deterioration.
Re: the blanket - I looked into shipping from Canada, and the cost is insane. Sadly, you would be better off trying to find a local supplier, I think. I sell blankets for $100CAD or less (depending on the weight) but with the shipping costing another $70... it is quite the price 
Ahhh... reality. Isn't it fun?
I have now spoken to both the Paed and the PT.
Paed says if we want to bring her back in for "off schedule" bloodwork, we are welcome to - but she doesn't feel that it is absolutely necessary, as - aside from more blood products - there is not a ton we can do that we are not already doing. I like the way she thinks, but if we need to get her in early, the offer stands. She only has another 2 weeks before her next scheduled round of bloods.
PT says that she has no idea what to do that we aren't already doing. I'll call the orthotist to see if he can ease out the area where she is blistering, and maybe pad her straps a bit more to limit the bruising, but until she can see the ortho, that is about as far as we can go.
What they both agree is that this is essentially unavoidable, and that it is the inevitable deterioration that comes with degenerative conditions. Intellectually, I know that, but emotionally, and especially, to hear it coming from the "pros", is a bit of a stab. It'll heal - but right now, it stings a bit.
And, sigh, no wine in the house 
This reply has been deleted
Message withdrawn at poster's request.
at defensive medicine with stupid no email rule.
Could you email yourself, cc everyone who needs to know, and fax a copy to paediatrician? Or even just read it out to the secretary?
Good luck with appt for Bee today.
Grr at your ex for not being able to plan better to have money to see his son. I hope your ds isn't too disappointed that he can't go to see him. I predict it wont be long at all before your ds writes his dad off completely
I figured I would do just that - not in a big rush to lose it a second time. Shame - it was all pithy and witty, too
As for the w(h)ine, DH has gone away for the weekend, and I am solo with the wee beasties. Probably a good thing there is no wine in the house 
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