You all know that I don’t do well with waiting. I’m sure I’ve told you all often enough, but here I sit again, waiting and hating it.
Tomorrow we should end up with a Plan. Tomorrow, everything is either going to be infinitely easier, or infinitely harder – we don’t know yet. I feel a bit like Schrodinger’s cat actually.
Evelyn’s seizures have been getting more intense, lasting longer and she’s added in a head wobble/bob to the movements that she does. Today she’s been too tired to feed properly, but too hungry to sleep, leaving her cat napping, grizzling and feeding intermittently. She still sucks well, but she’s resting more during a feed and not lasting as long at the breast. I think she’s probably fed every hour today, rather than every three hours that was the norm a few weeks ago. Luckily my supply is so good that for the most part, all she needs to do is lay there and swallow.
I guess that was my big worry, that the seizures would start to tire her out, leading to a trickle on effect.
It’s going to take a few weeks for the rest of her test results to come back, the spinal fluid for example needed to go to three different places for testing.
In the meantime we wait for the Plan.
Waiting sucks.
Hoping you get some answers soon
Hugs
Please, no more of this torture for your family. Answers, and may they be good ones.
Limbo.
Hell.
Sending you love xx
This waiting just sounds so heartbreaking.
I really hope you get a plan ASAP.
Hugs
I hate waiting too 🙁 Hugs to you and the family. I’m sending positivity your way, and wish, just like everyone else that I could somehow be of more help. Keep strong.
lots of love
Cait
I feel just awful for you. I hope everything turns out okay.
Waiting is the worst…sending lots of prayers and positive thoughts for you and your sweet baby girl.
Just caught up. I wish you quick answers and peace of mind. My heart is breaking for you. Xx
Waiting is a hell of its own. I’m so sorry this is happening for you. Wishing you swift answers and recovery for gorgeous Miss E. x
((hugs)) the waiting would kill me… hope you get an answer to this scariness soon
Crossing my fingers you find out it’ll get infinitely easier.
Hi Veronica, I come to you from Tiff’s blog earlier today…
I wonder whether the Interweb has led you to link up with anyone else who has ‘been there’ yet?
I hope so… If not, feel free to contact me.
Where you’re at right now is a very scary place, and I am very sorry that this is happening to your beautiful baby.
There are lots of treatments available for seizures, but it may take some time to find one that works for her… Not much help I know.
One thing you should be prepared for, as I don’t know that there is a paediatric neurologist in Tassie, is that you may need to bring Evelyn to Melbourne… I may be wrong about this though.
My main advice to you would be to trust your instinct. You know her best. If whatever is said doesn’t ‘sit right’ with you, ask more questions and/or someone else.
I hope there are some answers for you soon.
Susan x
Praying for your family and the medical team that you may have at least some answers soon.
hoping and praying that you get some answers and a good plan forward and really that things do become easier. Poor bubba (and you). take care
Finger and toes still crossed for you little mama! Makes it hard for me to walk but that’s alright. All those lucky wishes still being beamed your way too as well as prayers. Soon soon soon you’ll be on the down slope side of that hill of unknowns and misery. Hang in there little mama!
I wish I could help speed up the waiting. Xx
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