Laura meets the President of Ireland!!!

Laura had the privlige of meeting Mary Mc Aleese, the President of Ireland at a presentation made by her school in Trinity College on Tuesday!!! Laura's photo was published in one of our morning papers the next day.

An update........

Laura has been making great progress. I can't begin to tell the difference in her. She is stepping in her Rifton walker. Waving helllo, goodbye and blowing kisses. She is soooo giddy. She is still on one anti-convulsant which we hope her neurologist will begin weaning in Sept.

An update........

Laura has had her post-operative MRI. All is grand. Thank God. The neurosurgeon is thrilled. No sign of hydrocephalus. She is doing so much better and looks so well. She is weight-bearing through her legs alot now. She has started to move slowly (backwards) in her walker. The Hemispherectomy Foundation very sweetly sent her a Valentine's gift, which made me cry. So thanks to all in Texas who sent it xxx

New year, New hope

What a Chirstmas!! Everybody was well. Not a seizure in sight. It was great. Now its New Year. And I cannot wait to see what this year brings for Laura. She is soooo giddy. Taking alot more in, observing alot more and interacting alot more too. Its amazing. Sometimes we cannot believe what those damn things were doing to her. But now that they are gone she is such a different child. Laura has achieved more in the 3 months since the surgery than she did in the first 2 years of her life. Go Laura go xxx

Laura's home!!

Laura got home on Monday afternoon. She's alot better now. She's starting to weight bear through her legs and is sitting much better. She is being weaned off Epilim and its making a difference.

Laura's in Temple Street.

Laura has a really bad dose of a viral/chest infection. She was admitted into Temple Street Childrens Hospital on Wednesday. She's on oxygen and will be there til after the weekend. Even though she was spiking temperatures, she still has had no seizures (Thank God). All her bloods and urine samples are coming back fine. She is on an intravenous antibiotic also. She is improving a little day by day.

Upsy Daisy!!!

We dressed Laura up for Hallowe'en as Upsy Daisy from "In the Night Garden" because God love all she ever used to was fall over. She used to be so floppy it was all we seemed to say to her. But that was prior to surgery. Here she is sat beside her big sister Emma and little brother Aaron. Laura can now sit up by herself for quite some time. She is only 8 weeks over the operation tomorrow. She is a changed child. At the moment we are having some feeding issues but it seems to be down to teething as when we do get something into her she isn't spitting it out! She is alot more alert, alot more nosy!! Laura's getting a giddy little girl, so here's to the new Laura xxx

Laura's babbling!!!!!

Yesterday Laura started saying na na na na, then ma ma ma ma. This morning Emma shouted, "Mammy, Mammy she's saying da da da da!! Was thrilled, I swear I woke Brian up at 7.30 this morning to let him hear her, he only got in from work at 02.30am. He was chuffed to bits. Emma is listening to every sound Laura is making. We are starting speech therapy on Monday week so am making a list of Laura's new sounds. We had physio last week and her therapist couldn't get over the difference in Laura's trunk control in just the few weeks. She will be 6 weeks over the operation next Thursday, am shocked at just how much the seizure's were holding her back.

Laura's 2!!

This is picture of Laura on her 2nd birthday. Since she got home last Friday, she has had a vomiting bug for a couple of days. God love her she has been real cranky all week. Soooo not like her, well not the old Laura anyway. But since the operation she is eating stuff she would never in a million years have eaten. She is even drinking from a beaker, which was unheard of before surgery.

She went back to pre school on Thursday and is going to a joint physio & occupational therapy session on Monday. Easy time is over, time to get to work!! She is sitting up alot straighter since the surgery. She still can't sit on her own but hopefully now with alot of physio we'll see some difference.

Laura's home!!

They let Laura home today!! At this moment she is fast asleep in her own bed. I really don't think I could stand another day in a hospital. So all is well with her at present. Will keep you posted. Its her birthday on Tuesday, thank God she's home.

Laura got transferred

Laura got transferred to Temple Street last night. She is doing really well. However her big sister Emma has chicken pox!! She is in isolation at the moment as she was in contact with Emma. There's a question now over whether the water blisters that Laura was breaking out in prior to surgery was nothing to do with tegretol at all. We are waiting on results of a blood test. She is now finished on Tegretol as of today and she'll be weaned off Epilum now. She is charted to be discharged on Friday, all going well. Can't wait to get her home.

No beds........

Temple Street Childrens Hospital cannot accommodate Laura at the moment (Thank God!!) They are full. She will remain in Beaumont for the moment. They brought Laura down to theatre this morning to put her under a general anaestethic to put a central line in as her veins are worn out. She is still on the intra-venous antibiotic. They will test her again over the weekend to see how her infection is doing.

The Hemispherectomy Foundation

Today Laura received a parcel all the way from Texas. Cris & Kristi Hall from America have set up The Hemispherectomy Foundation. It is a Foundation in the US to help familes of children (or adults) that have needed to have half their brain removed. They very very kindly sent Laura some gifts of a toy, teddy & beautiful crochet blanket. I swear, the nurses were mesmirised!!!
I had been telling them all about the other children I had been reading up on and then comes this box of pressies for Laura. It was brill. I keep referring back to all the other children we have gotten inspiration from that have had hemispherectomy's. Everybody here thinks its great that we have received messages from America nevermind the thought of sending some beautiful gifts. My Dad is amazed!! We would like to thank you from the bottom of our hearts for thinking of our little girl many many miles away from you. It was soooo touching it made us cry xxx

Laura's getting transferred to Temple Street

The update with Laura is that one of the tests showed an infection in her secretions from her chest. She's still spiking temperatures randomly. They are starting her on a third antibiotic. But the problem is that they can't get anymore access from the veins in her hands or feet so she has to go to theatre to get a general anaestethic to get a central line put in, as the antibiotics are intra-venous. She still has some runny nappies which isn't helping her bum at all. She is screaming every time she wee's.

So the long and the short of it is that from a neurosurgical point of view Mr O'Brien is very happy with her so he is essentially finished with her. The reason they are trasnferring her to Temple Street Childrens Hospital is there are more paediatricians available & its where her neurologist is based so we can get her weaning of her anti-convulsants sorted too.

Laura's war wound

Over the last couple of days Laura's haemoglobin dropped, so she needed another blood transfusion. Her temperature is still fluctuating like crazy. She is being given loads of paracetamol. She's having lots of blood tests to check if she has an infection anywhere. So far they have all come back negative.

God love her she has an unmerciful sore bum!! The paediatrician thinks the food they were giving her through her feeding tube might be upsetting her tummy and so has given her an awful dose of diariah (spelling to be querried again!!). They have changed it tonight so we'll see how it affects her overnight. She took a good bit of oral feeding today but she refuses her bottle so far.

She was off oxygen most of the day. She's really only being kept there because of her chest. Its improving every day. But we're used to Laura having a bad chest and at this stage we just want her home. Mr O'Brien will review her again on Friday.

Daddy so proud!!

Hi all its Laura's Daddy just to let you know I am so proud of my little girl! I left her this evening and the difference in her form since yesterday is unreal. Laura was drowsy, chesty and not in the humour of much but today I got a hug, smile, head pulled off me and a very giddy girl. It was brillant to see the change!! Laura has been through so much in her life so far and has come along way but to come through brain surgery like she has is absolutely fantastic. I cant thank the staff,doctors and especially Mr O'Brien enough for the care and the new life she will have. I as a Liverpool supporter thought I'd seen a miracle in Istanbul but Laura you have out done that girl! "You will never walk alone". I am so proud of you laura and will always be there for you. Keep up the good work!!

She's getting back to her old self!

Laura's blood count was dropping so they decided to give her a blood transfusion. The microbiologists found a bug in her system so started her on an antibiotic. Both of those were started last night and today she is in bloody great form. She's kicking, pulling hair, throwing things on the floor and trying to take the nurses pen while she's writing up her obs!! Mr O'Brien wanted a review of her meds, so at the moment she is being weaned off Tegretol. I cannot explain how much of a difference there is in her since yesterday. She even took some porridge orally today. Fingers crossed we can get her back to oral feeding over the weekend. I did notice a slight tremor in her left hand and foot but when I put my hand on it it stops. The paediatrician will keep an eye on it. Apparently is nothing to worry about. So keep your fingers crossed she keeps improving as we miss her at home. Emma keeps telling me she has a wish and when I ask her what it is she says her wish is for Laura to hurry up and get better so Mr O'Brien will let her home!!

Laura's laughing!!!

When i went up to Laura this evening she started laughing and was smiling. I wasn't sure when I'd get to see her smile again but there is was ear to ear tonight. Mr O'Brien was on to neuorologist in Temple St, they are starting to wean her off Tegretol, starting from tonight. They hope to get her off the n.g tube over the next day or so, so she can get established on oral feeding and also take some of her drips out. I REALLY hope they do because then I can get to hold her. Its been a very long week not being able to hug her after all she's been through. Oh by the way the time the posts state underneath is not our time. Its 23.15 now so we'll see what time it says I did this at. Carol Ann, even I'm not mad enough to post at 4 o clock in the morning!!!

Laura's out of ICU

Laura is out of intensive care. She was transferred down to high dependancy yesterday afternoon. She is still on oxygen, although it is reduced. She has some secretions stuck in her chest but they are giving her chest physio to help her shift that. They are stopping her on the oral dose of zovirax for the infection in her hand as its giving her diarriah. They will keep applying the cream.
Because of surgery the times of her anti convulsants are all over the place. So she's not as alert as they would like. They are trying to bring them back to only morning and evening. They are giving her Calpol & Nurofen because her temperature is up and down a bit, so all in all she's fairly pumped with medicine. The swelling on her face has gone down but the side of her head is still quite swollen. I think she is doing well considering she is only 6 days post operative.

10 rounds with Mike Tyson!!

Laura's temperature is still fluctuating up and down. Mr O'Brien was around this morning. He is happy for her to remain in intensive care as they are not pushed for beds at the moment. She will be getting a chest x ray today just to be on the safe side. Nurse said her secretations aren't as bad today and neither is her cough. We can't get in to see her just yet as they are busy so will give an update after i see her.