Didn't get a notification for the updated info last time, Grrr I hate that.
Shannon- sorry you guys miss out on the trip, that's a bummer, but I guess it is important to do everything at the optimal time for Jessalyns sake. It is good that things are going so well though!
Sorry to hear that things aren't going to go quite as you had been expecting, but there a couple of great positives in there to enjoy. One is her own liver & the other is no colostomy bag at Christmas. I'm sure things will be happening before you know it & all will be well.
Shannon that's great news about the continued progress of Jess' liver function. I can totally understand the tinge of disappointment at the op being put back. I think we brace ourselves for "X" to happen on a certain date... we sort of think, "when that's over then this can begin" and we see it as being a step closer to the end (of the struggle).
I hope your overseas trip can be postponed.... that would be good.
Bummer about everything being put back, Shannon. It must be so hard to get psyched up about something only to have it all changed again. It's a pity that you guys may not be able to go to America anymore. Yay for Jessalyn's liver going so well tho!!
Oh wow Shannon that is fantastic news, those times in between the medical madness and you get to have a "normal" baby again are so precious, I am so happy for Jess and you that you've been getting the good outcomes from it all!!!
IKYWM about the doctor appointments, we seem to see 1 doctor or specialist every week or fortnight, it just seeems crazy even when he is doing fine..of course I am happy to have them monitoring Felix progress but it's time spent doing that stuff that takes away from other things you could be doing..
Just wondering if you knew about the Carer's allowance? it isn't means tested and is tax free? Jess would be eligable as she has a long term condition? I'm not sure if I mentioned this or not to you before???
I know it's a nice little bonus isn't it! I only wanted the HCC to pay for his oxygen and they said "Oh you are eligiable for the payment and back dated to when he was born" we got it when he was 11.5 month old..so you can imagine how welcome that backpayment was! The HCC is great, of course only for him, not us as we don't meet the criteria for low income with us both working..it was a bit of drama getting the paperwork done, but well worth it!
Let me add my congratulations, too! Well done Jessalyn... she's got the liver under control at the moment, so now for those chubby-bubby thighs. Come on Jess, you can do it.... I'm sure I could supply a picture of me in togs if that will provide inspirtation 8-[ :-#
BellyBelly Life Member
Jessalyn's Health Issues #3
& the other is no colostomy bag at Christmas. I'm sure things will be happening before you know it & all will be well.
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