Blogs

Kerry's Blogs from her Live Space on MSN

06 June

Update on Tristan's progress

Tristan is now 24 months old and we have had a bit of normality back in our lifes after over a year of good health however Tristan does have development delay, and still has feeding issues, mitral valve regurgitation, hypertention and unfortunately still isnt walking yet.

Tristan recieves a physio service to help with his walking and occupational therapist who provide him with special little boots to support his tiny feet and ankles which im hoping in time will eventually lead him to walk.....i cant wait for that day. He still has close follow up with the cardioligists in scunthorpe, leeds, and london as he is yet to have a forth open heart surgery known as the third stage norwood (fontan) which is to create a permanant passage (septectomy) between collecting chambers (left and right atrium) ensuring that a mix of red (oxygenated) blood and blue (deoxygenated) blood is flowing around the body. In short he will no longer be a blue baby and be more pink he will have beautiful pink lips for the first time in his life and pink finger nails and toes, he will also feed better and start to thrive much more we hope. We wont know the date of his surgery until he has had his MRI scan in london on the 10th June 2009 so we will be on sticks waiting to find out when he will need the next stage of surgery.

He is at this moment starting to talk saying small words and pulling himself up on furniture which is a great sign hes coming on in leaps and bounds his feeding still isnt great he feeds like a little bird sometimes i have to chew things up for him so its easier to swallow, as much as grosse this sounds its he only way i can get food into him. He also has a calorie drink called peadiasure which helps to build him up a bit more he now wieghs 19lbs 14oz which for his age is still small and he only fits in 12-18 months clothes still so hes still my tiny tim lol.

Despite everything hes been through and still has to go through hes such a charactor and is always so contented and smiley he really is such an inspiration, the future scares me so i tend to not think about it too much however i do accept that he may indeed take a turn for the worst anytime and that the next op does come with risks but i carry on regaurdless and enjoy my boy to the full im so proud to be his mummy and hope i can continue to be his mummy and hold him for many more years to come. Even after his third stage norwood he may still need a transplant in the future i live day to day with faith and hope that in ten years they may be a cure or some breakthrough in stem cell research until then hes here and this is now so im gonna make sure he lives life to the full.

Love you son you make me so so proud xxx

Sorry if i waffled on a bit ya know what i think i needed to write this to get out some buried feelings iv had bottled up cos im in floods lol i guess its just the reality of his condition and knowing how dam scary the future is, glad i did this im having a dam good cry and bloody needed it for a long time if that makes any sense anyways will update after Tristan's MRI scan on the 10th June.

01 February

Exciting month ahead :-)

Hello to all,

This is a positive and exciting month ahead i have began organising a huge event for fundraising in summer of this year its still under wraps but im aiming big so theres still alot to tie up keep an eye out for the announcement when the plans are complete.

Also i recieved a letter in the post from Suzie Hutchingson the chief executive from little heart matters website so im very excited about it and hoping something positive will come of our meeting. I am very much looking forward to meeting her she has been an inspiration for creating the site which was our only lifeline when our son was diagnosed with HLHS (hypoplastic left heart syndrome). I am also now in contact with Julie Chambers (Britains organ donor angel Zoe's mum) and we will be meeting up sometime after awareness week in feb i am hoping to help her out with the organ donor campaigning, its a very worthy cause as many HLHS kids like my son will eventualy need a heart transplant so its very important to get more people to sign up to the organ donor's line there are more details in my website newsletters.

Tristan however is now in his 19th month of age and is doing absolutely fine despite a couple of scares before christmas with bad bugs going around and one hospital stay he is coming on in leaps and bounds. He is now starting to stand up for minutes at a time and improves with each day the physio's are hoping he will be taking his first steps by his second birthday god i hope so i cant wait to see him walk. His last heart scan two weeks ago was very pleasing his mitral valve leak is stable and his HLHS side of things have good function for the time being so his next MRI will now be in June all being well he wont need his third norwood until next year hehe. He does however need to go to leeds in the next few weeks for some grommits to be put in due to him getting constant ear infections so i will be glad to get that out the way, but all in all a very good start to the year for my little boy and me.

Will keep you updated on how the meeting goes on the 10th feb with Suzie.

Well its almost midnight so im going to bed goodnight bloggers ;-p

5 November

Why is winter so harsh on our chd warriors?

Hi Visitors and friends,

Just a quick blog to let you all know how Tristan is doing its been a good and bad week to start off with the good news, The daily mirror are doing a xmas update on his progress and story woohoo i also have some possible magazines interested in publishing his story which is good news for awareness!!

So the media side of things has been hard and a long road to get the attention our chd kids deserve but its rewarding in the end i have learned to never give up hehehe.

The bad news is we had to put the photo shoot for the daily mirror back a couple of weeks because Tristan now has a severe ear infection, and being cardiac means he has hardly any ammune system and always picks up viruses and allsorts of bugs bless him. The specialists seemed concerned at the fact he has been getting so many ear infections and viruses so they have decided to send him to the ENT (Ear, nose, throat doc) so hopefully they might hold an answer other than the fact his ammune system is nill.

So far thats all i have to report really i hate winter though its a hard time of the year my lil man picks up so many illnessess and there is bugger all you can do aout it other than sit it out and usually spending most of the winter running to and from the hospital :-(

But hey with cardiac kids thats the way the cookie crumbles, still hes such a strong boy nothing ever seems to phase him hehe

Well i guess i better log off i spend wayyyy too much time on this thing at night hehe will update very soon :-)

22 October

Good heart scan today yeyyyyyyyy

Hello folks!

I'm very pleased with my boy today we went to see his specialists (cardiologists) for a heart scan which was very good his heart function is doing very well, they were pleased with is colour he didnt look cyanotic today (cyanotic means blue lips, fingers, and toes).

They have said that Tristan will not need to go back until after xmas which has given us some relief so after the fright he gave us last week this week has deffo made up for it lol.

The only thing that concerns me is when they say they are keeping a close eye on the leak in his mitral valve which could be a problem when he is older?

What this means im not sure? but for now all i concentrate on is that Tristan is doing ok for now so im gonna make the most of it and enjoy him hehehe.

From a very happy bunny and mummy,

Kerry :-)

20 October

Feeling a bit low

Writing to my blog, late at nite and feeling kinda mixed up lately, I've had a strange couple of months firstly Tristan had a couple of bad physio sessions

which we were told he will need walking aids he had a few tests which found his muscle tone in his legs was that of a 6 month old baby.

Tristan is now 16 months, This was a bit concerning and upsetting as there is still no progress on his walking he is only just sitting up at the moment but only for short periods of time.

Still i remain positive, the walking aids are there to help no matter how awful the virticle stander looks it will help him so iv gotta put my feelings aside.

On a positive note his portage sessions have been very good we have been told his mental development is that of a normal baby his age, so to my relief im so so happy with that.

We are two weeks away from seeing the surgeons to discuss his third surgery, so will deffo keep you informed of that i will be glad once we have an idea of how his heart is doing.

Recently (a week ago) he had a bad episode, he came down with what looked like a bad cold, we had to rush him into hospital while he was vomiting in the back seat i drove like a mad man thinking this was it!! to get to the hospital and realise he was choking on his own vomit which was awful. So we rushed him into the disney ward (he has open access there) where the docs were waiting they put him on oxygen took bloods ect and Tristan was doing fine he was ok thank god!!

It was found in tests that he had contracted the RSV virus grrrrrr (he was only two weeks from having the rsv injection) which usually prevents this, typical we thought but hey he was well looked after and after antibiotics and 4 days of oxygen he was well enough to be nursed back at home.

I have been up and down lately and i think its just due to having a wake-up call, after Tristan being in such good health over summer "for a change" lol, the last couple of months have been a wake-up call hes still fragile and we needed reminding hes still fighting and not out of the woods until his third stage surgery.

So until we know more thats it for now im just hoping im not having another bout of depression as i had it bad last year while Tristan had stage one and two

norwood,which i think its safe to say most parents get this we are all human after all lol.

A very tired Kerry night night :-)

22 June

Tristan is going to be 1 years old on the 25th june!!!!!

WOOOOHOOOOOO MY CHD WARRIOR IS GOING TO BE ONE YEAR OLD YEYYYYYYYYYYYYYYYYYYYYYYYYYY SO EXCITED HES GONNA BE SPOILED ROTTEN HEHEHE XXX