Thursday, August 30, 2007

ah life :)

I last updated this breifly on Monday, late at night, after coming home after seeing Peter for the first time for a week. The photo just shows a fraction of how far he has come in two weeks. He is now walking around very short distances as well as working on walking the corridors. Today he should've been doing stairs, am waiting on an update on that.

He now has a new portable VAC pump. Which makes farting noises. Very social machine that one. I went him with him to have an ECHO done yesterday, and it hit me, I could go and get a drink if i wanted, i didnt have to stay there with him. He no longer needs 24hour care from an LVAD trained person. Which means, if we run out of milk/bread/wine(for me lol) then i can just pop out and get what we need. no more family trips to the petrol station just before bedtime. No more calling his or my parents to bring us stuff when its raining and he cant go out. This new wonderful heart in his chest, isnt just changing Peters life, its changing everyones life around him.

I went to see him by myself yesterday, and we (physio and myself) managed to get him to go outside in a wheelchair for some fresh air. It was a lovely day, not too hot, not too cold. It was nice to be outside. No LVAD ticking along beside us. No worries about batteries. Just the farting VAC pump. He also walked from beyond the transplant unit doors back to his room. He still has loads to do. But its wonderful to see how much progress he is making.

Today I took the girls in to see him. Serena was so unsure, all her life she has known Daddy with an LVAD as it was implanted when she was 5months old. The ticking black box has always been there. She tried to use the trolly as a baby walker many times. She set that alarms off on the spare machine by switching it on, oh her face when that happened was so so funny, poor baby. So today. Daddy-LVAD=confused child.
Then Laurens turn. I thought she would be ok, as she is 5 on saturday and a bit mroe aware. But she was really really not sure about the situation at all. She wanted to go straight away. Itstook some persuasion and reassurence that everything was ok before she would even give daddy a hug. But she did do it. It wasnt untill i really thought about it, she was only 2years old when this all started to get really bad. So its understandable really.

And Nicole, well she was pleased as punch to be seeing her Daddy again. She has always been a daddy's girl, and they have a great relationship, even if she is 7, going on 13. lol.

And to top it all off, I have just had a phone call rom a local ballet school about places for this coming term for Nicole. She has been waiting for a place for a while, but i was always unsure about starting her on dance classes whilst peter was on the transplant list as everything was so unpredictable. Everythign seems to be coming together nicely.


Anonymous said...

Congratulations!! You all deserve many, many good things to come your way. The happiness/relief in your & peter's eyes says it all.

Thank God for that donor and all of your hard work and Believing that this was going to happen.

May you all start enjoying some form of "normalcy" in your daily lives.

an admirer

Tis me.... said...

Those pictures are so precious! I am still so overjoyed at all that's happened lately!

The Life of a Paed Heart Transplant Recipient said...

Really pleased to read this fantastic post. Have been thinking of you all lots whilst we have been away.

Peter is looking so good.

All our love

Bev xx

Tinypoppet said...

Was fab to see you Sarah, onwards and upwards! xx

RGPargy said...

Wow, Peter has come on in leaps and bounds! Long may it continue!


Sarah said...

It must have been so good for Peter to see his girls! He looks great!

Anonymous said...

Hi Misdee, I've followed your discussions on Mumsnet for the last two years or so. I am so glad for you all that Peter has his heart - he looks a fantastic colour. Hope he continues to go from strength to strength.