My daughter has a date....

[Ali]

Hi Dawn

Really glad that Sami is doing well, that's great news!!!! Don't forget to take care of yourself too though - she'll need you at your best!

Ali xxx

[sunrise]

Chris.....welcome anytime mate...would be lovely to meet you if you are passing, bring some good weather with you getting a bit fed up with the white stuff..lol

I have passed all you comments on to sami, she is looking slowly better every day, swelling has gone down on her face now allthough she had to have the doc again as she sneezed and opened the wound up.....i have to laugh really as she has really gone through it...and her imagination is sooooo good..a little blood can look so much and the head does bleed quite a lot, she had visions of her brains( yup she does have a few) leaking all over the place..lol.. She has been banned from even trying to brush her hair so consequently is feeling a little mucky on her head.

Oh...and she has a sore tum from where they injected her...umm i think some sort of anti co-??agulant to stop clots..??

As for me..im a bit of a workaholic when im concerned about anything but get lots of support from everyone,,and believe me eveyone at work now knows all about ACM!

Bless you all xx

Dawn x

[Marina]

Hi Dawn, glad Sami is doing OK now and the best of luck with her next procedure.

Hugs, Marina xx

[penfold]

lol Its horrible not being able to wash or brush your hair!! Bless her!! And yep, the injections will be Blood thinners as we all end up staying in bed for quite a time! 

Laura xx

[annemarie]

strange how they treat children so differently to adults - Natalie had no injections to prevent clotting and has never been offered physio for her neck.

Will totally agree on the hair front - because Natalie ended up going to theatre 3 times in 4 weeks her hair got shaved in 3 different places and we could not wash it for at least 6 weeks in total (until she was physically able to withstand washing). When we were able to it took both my mum and me to sort it out with scissors, shampoo and comb under the shower - I can still hear the screams!!

Good luck to Sami for the rest of her surgery and recovery

AM

[jade]

Glad she's doing so well! I hated not being able to brush my hair! The stomach injections were horrible, but the strange thing is I was in for 10 days I didn't have any but went back in for 3 days and had them then!! ouch!!

Send her my love

Jade xx

[Chris]

I dont remember having one??

[penfold]

Really Chris? Different hospitals maybe different views on it?

I had heparin injections. It wasnt even a proper injection, it was a litlle vial thingy like what they use when they give you the flu jab? I had the first one whilst i was under in the actual Operating room then i had them every day for the 9 days i was in! lol

Now i will take this opportunity to say i AM the worlds BIGGEST wimp!!! I cant cope with eye drops but these really werent that bad... in actual fact they hurt more after...? lol Its like an ache after where they did it so i just didnt want to start freaking anyone out! lol

Laura xx

[sunrise]

Hi folks, sorry for not being active for a while....
update on sami, 4 weeks after op, (icp monitor) headaches where significantly worse so rang the walton and they said they would hurry appointment through. 5 weeks on a black spot appeared on scar which had healed very well, sami scratched it, out came a load of yeuk and up popped a suture !!!, off to the local hospital we went and the doc said it didnt look infected and he didnt want to try and remove it, told us to come back if we where concerned.....next day more gunk so got in touch with walton who asked her to get to Liverpool...

4 Hours later she got home (not bad considering we live an hour and a half away from Liverpool) with a numb head after they removed said offending suture.

2 Days later....huge squidgy red area appears on new cut used to extract suture, explodes in to something that looks like the green goo from the alien....off to docs again, now on 2000 mg a day antibiotics to clear it up!

Needless to say, after 3 days on anti's sami is ok....and is off to Liverpool on the 6th April for the meeting with the ns to decide what to do next, lets hope we dont have to visit again before that !

Now that ive made the less tollerant of you feel sick..lol....how is everyone...?

Thinking of you all, love Dawn xx

[Chris]

Hi Dawn!!!! Missed you hunny!

Awful to hear that Sami has been through the mill! Glad that shes on the mend tho. Seems like these sutures can cause a lot of issues as some have mentioned this before.......

Keep in touch

Chris

[penfold]

Hi Dawn! Lol!! Im glad sami is doing better now, I had a reaction to the internal stitches used and this is why my wound wouldnt heal properly for a while! Even now i am getting little 'spikes' sticking out my head...! They are the remnants of the stitches from inside and will work their way out my body (Eeewww!!) so they poke out until i either can grab 'em (Other half shouts at me for that though!) or they just fall out!! They are  SOOOOO sharp its amazing!! I never knew that they were made of such strong stuff! It really is wire! but so fine like hair...? weird... Anyway the NS has put it in my records not to use it on me again!

How is her actual headaches now?

Laura xx

[sunrise]

HI laura,

Oh dear, splittin my sides laughing....hypersensitive antenna sami called her suture!!, and yes very sharp, lol.
As for her  headaches, mornings are awful, cant get head off pillow the pain is so intense, luckily she has a fantastic hubby who gets the kids up, fed and the eldest off to school. Pain differs from day to day and you can see in her face how bad it is, the worse the pain the more her eyes seem to bulge.

She really is interested to see what the doc has to say regarding the icp monitor readings, but a little concerned as this next appointment is at the Walton with one of Mr Piggotts clan who specialises in the spine...so we will wait and see the outcome, i think they may be doing a few more tests before the make a final decision, especially as her malformation is not only lenghtways but horizontally as well...she has a real 'fat' cerebellum !!..I always knew she was 'special' lol.

Her scar from the monitor stretches about 2.5 inches from just above her forhead hairline in to her head so it just looks like a 'parting' which isnt too bad at all.

Hope you are keeping well Laura   xx

Chris, missed you all as well, very busy at work preparing for all the incoming kids....Im a chef at the YMCA national Centre on the shores of Windermere....

Speak soon, Dawn x

[Chris]

ahhhhh my wife sharon used to work on the boat yards there before she moved down here with me....... the last one she was at was Maiden Marine before they moved to near the ferry and Cumbria marine and mountain.....had many a regatta on windemere with tying people to office chairs and chucking them off the jetty and moorings ;0

[annemarie]

Hi folks

Have many a good memory of the Lakes (hubby is from Whitehaven ) as hubby and I met whilst working in Grasmere - the gingerbread is a family favourite of ours and we have to stop off there every time we go up cos the kids are mad on it.

Hubby also worked in Windermere (at the now gone Priory Hotel) many moons ago!!

On the stitch front Natalie also had a couple of bits of thread that slowly worked their way so far out before I pulled them the rest of the way and there is a little black speck at the side of her scar that I am keeping my eye on cos not sure if it is another 1 and this is 2 years later!!

Hope Sami's head clears soon and she has good news at her appointment

AM

[penfold]

Hahahaha! Its gross isn't it?!! AM... Will you come do mine cos my hubby wont...Think he thinks my head will unravel or something...? Honestly....!!