Having a pity party - everyone is invited...

[BeeMom]

Today has been a rough one - and it is only 1pm.

Bee has been quite ataxic and having a lot more seizure activity recently. She is on a new medication that has to be titrated over 8 weeks, so it'll be a while before we see how it works. This morning, no sooner had her feet hit to floor to start the day, then her face hit the floor. She managed to miss her rug entirely, and her chin hit the hard floor instead. The short answer this is that she has a 1" wide gash that goes down to the bone. She has been reassembled, but what a great way to start the day

So, while on the way to the doctor to get her tended to, her PT called. We are going to talk about training her with forearm crutches or quad canes - she is too unsteady to walk without some sort of support any more. The PT also dropped a bit of information that has us concerned. She had just left the meeting where the school discusses students' needs for next year. Apparently, the original plan to work toward a part time transition into a MS school next year might be a straight transfer, instead. They are concerned that there will be too may transitions for her - attending 2 schools, spending half her day in a self contained classroom, the other half in a MS class on the days she is at the one school, and then at the school she is currently attending a couple of days a week. While I understand their rationale... I am not sure in Bee's case it is a sound decision.

So, at the same time that we are looking at her disease progressing and her loss of the ability to walk independently and other neuro changes, we are being told that her place in the SS she currently attends is tenuous. We will still discuss it with the director and the team, and it is really nice to be going into the meeting with forewarning and an opportunity to phrase our questions instead of being blindsided, but hell - not all at once, please.

So, yeah... it has been a shit start to the day indeed.

[Bluebirdonmyshoulder]

Oh my love, I'm sorry. Your posts have been so inspiring to me, I wish I had something inspiring to say back to you but I'm afraid I don't.

Except I'm right with you at the pity party and look, I've brought chocolate, cake, wine and some cheesy music!

[BeeMom]

Bluebird I have been thinking constantly about you and bluechick... and little hazey, and all the other families I know are having a tough time...

Perhaps it is "misery loves company", or perhaps if I don't remind myself that other families struggle too I am so terribly lonely, but it gets me through the day.

Party on!

[Bluebirdonmyshoulder]

Oops, those went down well!

A hug coming your way. By the way, I like standing in the kitchen at parties, what about you?

[used2bthin]

Sorry to hear that beemom. And I will join you. Rubbish time at the moment and also have transition going on but the other way round,also not sure how it will pan out as not sure either placement is ideal. So I sympathise, good that you had a warning though definitely.

Bluebird hope things are improving for you too x

[hazeyjane]

Sorry to hear how hard things are for some at the moment.

I would love to come to the party, I will be the one in the corner cuddling a bottle of wine, singing The Smiths.

[FrustratedSycamoresRocks]

Can I come to your party too. I have hugs, tissues and chocolate and a dovet to hide under.

[Handywoman]

Me & DH are counting the hours weeks til our community Paeds review in the vain hope that she will throw us a rope with some decent thickness to it and a bit of hold. Sad but true...

So I've got party hats and party blowers and will sing along / dance to any tune at all....

Beemom you ARE an inspiration.

[bigbluebus]

Can I come to the party too please???
Transition time for DD here too only it's from Children's services to Adult services. Feel like I have been pushed off a cliff with a very slack rope at the moment.
I can bring a bottle of wine that I earned for doing a talk at a conference yesterday.
Hope your day gets better Beemom.

[BeeMom]

Trying to make the best of a poor situation, I have been looking for "cute" crutches/canes. Did you know that the best ones come from Europe?

They will cost a mint to get here for Bee, but once we figure out the grip type and size she needs - damn the torpedoes, I am getting her ones that are pink and purple. If I can't make the need go away, I will at least do what I can to make sure she doesn't have to lug around awful looking metal monstrosities.

Today has been no better... but I think it'll require a bit of a mental shift for me to make it a new normal. Then, just as we have done with every detour prior to this one, we'll cope.

Right?

[BeeMom]

So, just in case anyone wants to hear the update on this...

Bee's chin is healing nicely - I just changed the tapes for the third time and it looks good... 3-4 more days and she can go without a dressing.

There will be no "cute" pink/purple crutches/canes for Bee, the PT has determined she is too unsteady for them and needs a walker instead. I'll admit I am disappointed - I was hoping that we could get away without that much support. She does have better and worse parts of the day, so I will talk to the PT before we go ahead and buy anything... maybe it is just a matter of more training and practice (I hope).

But... the biggest part - the transfer out of the school into MS... the PT was speaking FAR out of hand. I spoke to the headmistress today, and this is the actual information... A receiving school has not been named. If she does transition, it'll be part time. 2 days a week for the first year, to work on the social aspect and subjects that are not covered in the hospital school. 3 per week for the second and 4 for the third if deemed appropriate. It will be a 2-3 year transitional period (big change from straight up demission) and if, at any point she deteriorates to require full time at the hospital school again (which is very possible) then she retains her full time spot. We meet on Thursday to start working on hammering out what next year will look like... she is at the top of the list for neuropsych assessment, so we will have a better idea of where she is actually functioning.


Kind of nice that I finally prepared for a fight I don't have to have. I was prepared, to go in with the "legal references" a'blazin'.

Not all things are settled within the house - DH is still jobless, money is still tight and XH is still an ass, but at least those are old and familiar fights.

The old ones are enough, thanks.

[bigbluebus]

Beemom Glad you have clarified the issue of the school transition.
Shame about the crutches though - don't they do a pink walker? DD has a choice of wheelchair colours here - both frame and fabric. She is very much a pink girl too, so sports a bright pink cover on her chair.
DD has just finished a course of ABs for a chest infection last night and just as we thought she was on the mend, she decided to have a seizure as I was getting her ready for school today. So another day of cancelled appointments for me and stuck in the house again - really must do some housework instead of MNing all day!!!!

[BeeMom]

I'll admit I was disappointed about the crutches/canes - the PT is recommending a crocodile walker, which comes in only orange or black (and costs $1000) - but I think there might be other options, and want to discuss it before anything is ordered. Bee likes her pink and purple... and is far less likely to refuse to use it if she can have something she likes.

I was once asked what part of Bee's disease I hate the most. It definitely has to be the seizures and neurological regression. She was started on a new med 2 weeks ago (and is not quite half way to her goal dose) and cannot tolerate the side effects. She is currently lying on the couch twitching and too dizzy to even sit up. We have the trade of medication that leaves her unable to function and might help her seizures or seizures that count in the hundreds per day. This will be medication failure #11. They are discussing surgical intervention... and I hate that idea.

Sigh - not an easy road to travel, for sure.

[theonlyoneiknow]

Hugs bee, thank you very much for your kind PM. Sorry I haven't replied yet, its been a bit busy but will do son. X

[lougle]

Just a quick google, but www.zazzmobility.com/walker-decorations.html - perhaps there are more sites out there?

[lougle]

Or could you take it to a bike shop/car body repair shop and get them to give it a re-spray?

[BeeMom]

There is always funky pattern duct tape, too

[lougle]

handlebar tape

[lougle]

Heat-shrink tubing in purple

[BeeMom]

OK... the heat shrink tubing is fantastic - I'll definitely remember that (I can put it on the scratched up push rims on her wheelchair) Thanks, lougle

[Bluebirdonmyshoulder]

I'm returning to the party, had a crap day. Just want to sit in a corner and drink a bottle of JD by myself, then snog someone unsuitable.

Beemom can you further customise Bee's walker with stickers or something? You can get quite cool small ones that can be used to cover up nicks and scratches on mountain bikes, they can be quite funky!

[Bluebirdonmyshoulder]

Link to some bike stickers -

www.freestylextreme.com/uk/Home/Item/Accessories/Stickers/default.aspx

[BeeMom]

Thanks for the link, and share the JD, would you?

Sorry about your crap day - ours was wickedly up and down, too. I think of you often, hope you are taking a moment or two to take care of yourself.

Honks flying your way.