I'm sorry - need to vent again

[KathyM]

I'm so sorry I need to vent again.

Had a nightmare time trying to get an appointment at the GP's (nearly said vets) for Chris' hayfever today (it does get on topic I swear).

I phoned this morning at the set time, and got the receptionist. I asked for a phone consultation with the doc for his hayfever and she said it wasn't necessary, the prescription clerk could sort any medication we wanted, as we'd had hayfever meds prescribed in the past. I said that I wanted to discuss what treatment we got for him and possibly not get the same as last year (dependant on medical advice) and she confirmed the prescription clerk could sort it for us when she got in at 11am. I assumed at this point she meant Nurse Practitionner (here in the UK some nurses can prescribe), so agreed to phone back.

Phoned back at 11.30am, got put through the prescription clerk. She asked me what repeat prescription we wanted. I said we didn't want a repeat, and explained what the receptionist had advised me. She said if I went down she could do a repeat of last year's meds, ready in a day or two. I explained why I wanted advice, and that if I'd had a phone consult this morning, we wouldn't be waiting for a prescription when he was so uncomfortable.

At this point she said that if we wanted a phone consultation or appointment we could phone back tomorrow and see if we could get slotted in, because you have to book one before 10am for same day appointments. Otherwise we could get a repeat if we came down.

Well I went down . I explained what had happened on the phone. Receptionist was a different one, and was lovely and booked us an appointment for tonight. So all sorted, huge sigh of relief.

Anyhoo, we've just got back. Chris does need the same meds as last year for his hayfever, but can have eyedrops if they wear off too soon, just have to go back (and no doubt go through all of the above again!). BUT, at least that's out of the way.

Now the downside. I mentionned about Chris' arm/neck/shoulder pain and how he has his appointment next month. Prof. Kay's secretary had advised us to see the GP about his pain in the meantime if we needed help, so I thought it best to mention it. Well the doctor checked his range of movement tonight and it's nowhere near as good as it was, and I didn't notice until I stood back and watched someone else do it!

This happened before after his first sub scap release - the physiotherapist (not part of his specialist team) told us he didn't need stretches any more and we stopped and he lost his ROM and needed another sub scap release. Two years ago we were told he didn't need the physio we did any more and now he's losing his ROM again. It's looking more and more likely that he'll need more surgery now and it's all my fault for being too complacent and trusting what others say and not carrying on his physio at home when I should've learnt my lesson the first time.

Sorry - not posting for mass sympathy, or anything like that - just need to absolutely let it out. I carry so much guilt for him even having an Erb's Palsy and for not sticking up for him when he needed me most (as he was coming out!). I feel like I've caused all this from day one.

[KathyM]

Started Chris' stretches again last night. He was quite uncomfortable at certain points (I have no ides about the technical terms for each stretch). I hate this waiting game but have dragged myself out of the selfish "Why me" attitude and am getting back on with it. Just sometimes I feel (as I'm sure most of you do) that I'm unequipped for this and that other "better" mums would cope with this better.

Chris and I talked openly about how he feels about the appointment next month and what he feels might come out of it. It's amazing how much braver he is than me! *lol*

[Angela Butterfly]

Hi Kathy, I am the mother of a severe LOBPI, Jill now age 21, and 2 other children only a little older than she.

I looked back a bit and found an earlier post, that stated Chris was age 10. I know how demanding Therapy can be. I also owned a business, and at times, during the extra busy times, I too felt so guilty, because there just wasn't enough of me to go around.

When Jill was about the age of your Chris, this is what I found I had to do. I had a palaroid camera, and I took pictures of Jill doing some of her therapy activities (for her it had to cover her TORSO, shoulder, entire arm, wrist, hand & fingers). I mounted the palaroid pictures in a photo album (3 pics to a page) If needed wrote more instructions on that space on the bottum.

Because her scapula needed to be stabalized, I remember going to the drug store and looking at all their over the counter bracing systems. I bought a back brace (made for women, cut lower in front) and placed it hi under her arm pits, with the back of it going higher, to stabilize the scapula. I think I would put it on her, and then go back to working in my office, as she did her upper body stretches, and hand therapy's.

I took an old very heavy rolling pin (for pie dough) and wrapped a weight around it. She laid on the floor and did lifts and circles with it. I also had a bar in a doorway....etc.

I used those Palaroid pictures alot all through the years. The key is that Chris is old enough to take on some of the responsibility himself now. Does he have access to swimming?