Here some suggested organisations that offer expert advice on SN.
May I whinge for a bit?(22 Posts)
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.
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?
That's a shame about the blanket - 70 dollars is a lots for shipping but they are heavy.
Getting everyone joined up is exhausting. I'm lucky that the school are pretty good at organising the therapy side of things but anything medical is a different ballgame completely.
You sound awesome btw!
Called the paed - left a message. Hopefully I hear back from her. I REALLY want to hear "as long as she is not actively bleeding, don't worry about it" but we'll see what she has to say. Most importantly, at least the paed will be in the loop so that if anyone expresses concern about Bee, it won't come as a surprise to the paed.
I just don't really want to be heading in for more blood products.
BeeMom, I know this is obvious, but emailing is so much easier than leaving messages, cos you can cc everyone. I don't email ds's paed direct, but I do email his secretary, then do a courtesy call to
highlight it check she's got it.
If only I could. Paed will not accept emails - privacy laws and all that crap.
However, I know her receptionist is excellent and will pass the message. The main question right now is what (if anything) the paed wants to do about the bruising (as the bloodwork is the better part of 2 weeks old now).
I know the PT will want for me to have made contact with the paed, so I did it pre-emptively. Beyond that, the paed can either contact the consultants or tell me to do the same. I just want some direction (and, because Bee looks like we have been pelting her with rocks, a paper trail)
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
I'm listening, BeeMom. It's not an easy path you are treading. The reality of the situation is just magnified right now.
BeeMom, it sounds like a really tough patch at the moment. (((Hugs))) and thinking of you.
Thanks for everything - having people willing to listen when things are just that much too much makes all the difference.
Bee got home from school and as I got her off the lift, I looked up and saw smoke off in the distance. There was an industrial fire not far from her school, so I am not 100% sure of she will be going in tomorrow (the Director is very concerned for the safety of "her" kids - the 36 children in the school are the most "fragile" in the area). If the air quality is not acceptable, she will shut the doors.
It was nice to have her home, though - her little voice and goofy smile can fix just about any foul mood.
Hi, BeeMom. Did Bee get a day off school today?
Oh Beemom, I remember how hard it was for my family when my baby brother had a problem with his platelet levels. He was 2 when it started, and at first, because of the medical info available in the 60s, it was thought he had leukemia and was going to die.
The deficiency meant that he bruised all the time, even holding his hand, or him falling over on the carpet was enough. If he got a cut, he bled like a haemophiliac. It hurt everyone to see him so battered.
It lasted off and on for around a decade, flaring up and going into recession, then it disappeared.
But it's only a very small taste of what you are going through, you have my sympathy. It's the powerlessness that hits you too.
You are also doing an amazing job with your DS, hard though it must be not to want to show him what an arse his father is, I agree that he's also half of your DS. Better that he works it out himself, with your support.
at defensive medicine with stupid no email rule.
<thinking cap> 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?
The medical part has been sorted
as much as it can be, at least . Bee is a child of question marks, and DH and I feel it is in her best interests to try and limit the "medical intrusion" portion of her life - she quite literally has spent close to 1/2 of her life in hospital, and now that she is relatively stable, we do try to normalise things as much as we can. Her paed called within 3 hours of me leaving the message, so now I know the paed is aware, the PT knows and will discuss it with ortho, we are getting her in to see the orthotist for more splint adjustments, and met/gen only sees her infrequently, so we will send her a letter in the post to update her.
I got a call from the neuropsycholgist and he wants to have a "sit down" meeting with DH and I before we meet with the new school in less than 2 weeks, so... we will be meeting tomorrow morning at 11. I am anxious to hear what he has to say (he said today we have a "lot" to discuss and he wants to talk with us prior to meeting with the new school so we can have all our questions answered). I am curious to hear what he has to share... this is testing that should have been done a long time ago, but was mothballed when they shut down the Paediatric Stroke Team, and again when Bee was hospitalised and too unwell to test appropriately.
He had some pretty strong opinions about Bee before he began her testing, and alluded to the fact that he had been led astray by first impressions last week. He has been doing one assessment or another with her (30 minutes to an hour) every day for the better part of 3 weeks. If nothing else, it has been thorough.
I'll update when I get home tomorrow. Oh, and EllenJane, she did go in today after all.
From a DS/XH side of things, I phoned XH today after text messaging him twice and emailing him as well, he claims he didn't get the emails, or the texts (but was able to answer the mobile I sent the text messages to - imagine that!) and "can't afford" the rail tickets for DS to visit him, but if I would pay this time, then he would pay next... I know how that works - and since I paid half for the last two trips, the answer was a flat NO. I told him to let me know when he had the money together for the tickets, and I'd let DS know to plan for that weekend. The ball is in his court now.
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
Actually, ds is not disappointed at all - he's actually happy because that means he gets Friday evening with his mates at the games shop and can have a lazy weekend around the house if he wants.
The appointment was... uhh... heavy. On the surface nothing surprising, i guess, but on the other hand, it is always tough to hear how different she is. Lots of reading to do, I guess. I am the type that needs to understand, and right now I am feeling a bit shaken.
I'll try and put it together as a post later, right now, I am just digesting it all.
(If this double posts, I am sorry - it said the site was down the first time I tried)
Beemom - hugs to you. I am definitely the type that likes to read up too.
I could just about swear - I typed up a novel-length post, it posted and then the bloody MN site went offline. Now, it has disappeared.
Mumsnet is up and down like a yo yo today. Pour a glass of wine/fave juice. Then type up again in a word doc or in your email and copy paste.
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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